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Children's participation in chronic illness decision-making: an interpretive description McPherson, Gladys Irene 2007

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C H I L D R E N ' S PARTICIPATION IN CHRONIC ILLNESS DECISION-MAKING: A N INTERPRETIVE DESCRIPTION  by  G L A D Y S IRENE MCPHERSON B . S c . N . , University o f Alberta, 1981 M . S . N . , University o f British Columbia, 1999  A THESIS S U B M I T T E D IN P A R T I A L F U L F I L L M E N T OF T H E REQUIREMENTS F O R T H E D E G R E E OF D O C T O R OF PHILOSOPHY  in  T H E F A C U L T Y OF G R A D U A T E STUDIES (Nursing)  UNIVERSITY OF BRITISH C O L U M B I A A p r i l 2007  © Gladys Irene McPherson, 2007  1  ABSTRACT Participation in decision-making and inclusion in the important matters o f one's life are upheld as measures o f equality and indicators o f the moral status o f individuals in liberal democratic societies. To some extent, the status o f children i n western societies is a contested question, and hence, the nature o f children's contributions to decisions is a matter o f debate. Evidence suggests that in spite o f an apparent societal commitment to children's participation i n the important matters o f their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation o f one group o f children—chronically i l l school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers.  In this study, children's participation i n health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children's opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance o f children's voices); and the standing achieved by children's views within decisional processes (the relevance o f children's voices). The interplay of adult authority and children's agency at the nexus o f the resonance and relevance o f children's voices created certain participatory  spaces, depicted as moral and social realms variously  characterized by children's silence, children's tangible expression, adult imposed authority, or adult assumed responsibility.  The findings o f this study demonstrate a need to re-think our concept o f children's participation, and point to the importance o f developing a more relational and contextual understanding o f how chronically ill children may contribute to important matters in their lives. - ii -  The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children's health care encounters, toward a goal o f creating conditions where possibilities for children's participation are optimized.  T A B L E OF CONTENTS Abstract  n  Table of Contents  iv  List of Tables  vii  List of Figures  viii  Acknowledgements  ix  Chapter One Introduction to the Study  • 1  Focus of the Study  3  Decisions as Sites of Analysis Childhood Chronic Illness, Decisions and Children's Participation The Research Problem and Questions  3 .'. 5 7  Structure of the Thesis  9  Summary  10  Chapter Two Philosophical, Theoretical, and Empirical Locations of the Project Introduction  11 11  Chronic Illness and Children  11  Defining Chronic Illness  12  Decision-Making, Coping and Adaptation in Childhood Chronic Illness  14  Health Care Relationships and Decision-Making i n Childhood Chronic Illness  16  Children and Children's Participation  18  Theories and Models of Children's Participation  19  Children's Participation from an Ethical Perspective  23  Children's Contributions to Health Care Decisions  29  A Pragmatic Approach to Knowledge Development  34  Attending to the M o r a l Dimensions of Children's Participation  36  Sustaining Attention to Practices of Participation  37  Accepting the Contingent Nature of Knowledge  38  Embracing Complexity  39  Summary  42  Chapter Three Methodology  44  Introduction  44  History of the Project  44  Interpretive Description as Methodology  46  Data Collection with Children and Parents  51  Negotiating Entry and Access  52 - iv -  Recruitment of Children and Families  53  Sample  55  Research Encounters with Children and Parents  61  Other Sources o f Data  67  Data Analysis  68  The Analytic Process  68  Specific Analytic Challenges  70  Ethical Dimensions of the Project  73  Consent and Assent  73  Confidentiality  76  Rigour in Interpretive Description Credibility  76  '.  78  Relevance  80  Summary  81  Chapter 4 Children's Voices in Chronic Illness Decision-Making  83  Introduction  83  Discerning Children's Voices  84  The M a n y Expressions o f Children's Intentions  85  The Embeddedness o f Children's Intentions  96  Children's Standing in Places o f Decision-making  112  Meeting a Standard of Reasonableness  114  Achieving Significance  126  Summary  134  Chapter 5 Participatory Space as A Realm o f V o i c e and Standing Introduction  135 •  135  A V i e w of Children's Participation  136  Spaces of Children's Participation  137  Participatory Spaces in Chronic Illness Decision-Making  140  A Space of Children's Silence  •  143  A Space of Children's Tangible Contribution  154  A Space of Adults' Imposed Authority  165  A Space o f Adults' Assumed Responsibility  172  Summary  176  Chapter 6 Children, Participation, and Health Care Decision-Making Toward a Moral Understanding o f Children's Participation  178 179  W h y We Should Care about Children's Participation  180  W h y a Limited Concept of Participation Might Cause Harm  183  What We Need in a Concept of Participation  191  Health Care Practice and Policy within Participatory Space - v  -  193  Practices o f Responsibility  195  Critiquing the Theoretical Terrain  201  A s k i n g the Difficult Questions  205  Summary  207  Chapter 7 Implications and Future Directions  209  Children's Participation in Health Care Decision-Making  209  M o v i n g Forward  211  Shifting our Discourses  212  Scrutinizing Policy and Practice  '.  Directions for Research  217 218  Summary  221  References  222  Appendix A U B C Behavioral Ethics Board Approval  236  Appendix B C I H R Operating Grant Research Proposal  237  Appendix C Recruitment Pamphlet  247  Appendix D : Demographic Form  249  Appendix E Interview Guides  252  Appendix F Decision-Making Grid  253  Appendix G Conversation Cards  254  Appendix H Consent Form - Parents  255  Appendix I Consent Form - Health Care Providers  259  - vi -  LIST OF TABLES Table 1 Principles Guiding Design Decisions in Interpretive Description  49  Table 2 Sample Composition by Age and Sex  57  Table 3 Primary Medical Diagnoses o f C h i l d Participants  60  Table 4 Summary of Principles and Techniques Employed to Ensure Scientific Integrity  82  Table 5 Dimensions o f Children's Participation and K e y Influences on Each  - vii -  137  LIST OF FIGURES  Figure 1. Timeline depicting the history o f the research project  45  Figure 2.  Participant composition o f research encounters with chronically i l l children and their parents 63  Figure 3.  Derek displayed his paper airplane. He enthusiastically participated in activities and conversation but was reluctant to speak about his health condition 90  Figure 4.  In great detail, Sean explained the construction and function o f this L e g o ™ airship to me 107  Figure 5.  Participatory spaces in relation to the resonance and the relevance o f children's voices 141  - viii -  ACKNOWLEDGEMENTS I have received substantial financial support throughout my doctoral studies and for this research project and for that I would like to acknowledge the Canadian Institutes o f Health Research. I am also grateful for the funding I have received from the Michael Smith Foundation for Health Research, the British Columbia Medical Services Foundation, and the University o f British Columbia School o f Nursing. This journey has been long and far from simple. I am grateful to the many people who have joined me in this journey: some as participants in this inquiry, others as they provided academic guidance, and still others who simply walked beside me. I am indebted to the children that participated in this project. Thanks for agreeing to talk about participation and choices, and then talking about what you understood to be the important elements o f your lives. Thanks too, to the parents who contributed to this inquiry: I appreciate your willingness to discuss some o f the complexities o f making decisions with and for your children. I express my deep gratitude to my research supervisor, Dr. Sally Thorne, whose spirit o f inquiry, along with her wisdom and kindness created the space wherein I could begin and complete this project. I have learned so much from you.  A n d also, to my Dissertation Supervisory Committee: Dr. Angela Henderson, for your humour, encouragement and guidance; Dr. Paddy Rodney, for your never-ending commitment to fostering ethical practice i n nursing, and for your unwavering belief that projects such as this may generate important knowledge for our practice; and Dr. H i l l e l Goelman, for bringing a broad understanding o f the issues o f children and childhood to this work, and for asking tough questions about the process o f inquiry and the claims that I have made.  M y dear friends have been a vital part o f this journey. M y thanks to Helen Brown, L o r i Irwin, Sheila Turris, Karen Mahoney, Tracie Northway, and Rosella Jefferson: you helped me believe i n this work when I was unsure I could carry on. T o my friends Kerry and T i m Olohan: yes, I am finally done.  - ix -  Above all, I am blessed to have a loving and patient family. To my brother Chris Lindholm, my sisters Heather Lindholm and Audrey Habke, thank you for your support and patience. Thank-you to my son Stuart; you have the beautiful gift o f asking difficult questions, and you have taught me much about children and their voices. A n d , most o f all, thanks to my husband Dugald, who never knew what lay ahead as I started down this path: your steadfast love and your patience have sustained me. Thank-you.  This being human is a guest house. Every morning a new arrival. Rumi  CHAPTER ONE INTRODUCTION TO THE STUDY The last 20 years have been characterized by significant efforts on the part o f academics, professionals, policy makers and others as they grapple with implications o f the principle embodied in Article 12 o f the United Nations ( U N ) Convention on the Rights o f the C h i l d (United Nations Children's Fund, 1989): that children have a right to a say i n all matters that affect their lives. Children's participation in governance structures, as well as in the immediate and more private affairs o f their lives, is deemed ethically important, and academics, professionals, and policy makers are asked to pay attention to the ways that children are represented in all matters o f their lives (Government o f Canada, 2004; United Nations Children's Fund, 2002). Amidst these calls for increased attention to children's participatory rights, and amidst admonitions that we are failing our children on this front (Franklin & Sloper, 2005), the rhetoric o f children's participation has proliferated; we debate their rights and their interests, and we endeavour to determine children's capacities for participation in various matters. Within health care practice and policy, children's rights to participation have been difficult to reconcile with concerns about their interests, and a growing body o f research and theory has addressed the question o f how we might best ensure children's rights are met. In this context, where the language o f children's participation has become increasingly prevalent and where considerable efforts have been directed toward enhancing children's participation in various domains, our understandings o f what constitutes children's participation, how particular life experiences influence that participation, and how participation is shaped by the relational and contextual aspects o f children lives, remain matters o f debate.  In this project, I enter into these debates, raising questions about what constitutes children's participation in health care decisions when children live with chronic illness. A m o n g 1  the questions I consider, the following are o f primary concern: H o w do perspectives on children and childhood influence health care practice with children and shape the contexts o f decisionmaking with or for them? Who are children i n relation to their parents and health professionals, and what status ought they to have in processes o f health care decision-making? A s a paediatric nurse and paediatric nurse educator, and having worked with children and their families for many years, I am aware o f some o f the complexities inherent in eliciting children's views and in incorporating their views in decisions related to their care. I have been influenced by scholars in various disciplines, particularly those writing from feminist and critical perspectives who have challenged some o f the embedded assumptions about children and their abilities, and questioned certain entrenched views o f children's position within our social order.  There is little doubt that adult perspectives on children and their interests profoundly shape children's lives. Research has shown us that in spite o f a societal commitment to the inclusion o f children in decisions that influence them, and a recognition o f the benefits o f such involvement, children tend to be excluded from many decisions i n which they might reasonably be involved (Hart, 1997; Lansdown, 2001; Shemmings, 2000; Shier, 2001). A s has been substantially shown by several researchers in recent years, however, adult perspectives on children are not the sole determinants o f children's opportunities and capacities to engage actively in the matters o f their lives; children are active participants in the affairs o f their own lives (e.g., Archard & Macleod, 2002; Bluebond-Langner, 1978; Prout, 2002). That children are  '  In this study, I define chronic illness as a child's embodied experience of a long-term disturbance in the structure and function of a bodily organ or system, and of the constructed meanings of that condition within the relational contexts of his or her life (Stein, Bauman, Westbrook, Coupey, & Ireys, 1993, p. 345). Throughout this work, I use the term chronic health condition interchangeably with the term chronic illness. -2-  not merely passive recipients o f adult attention, but are active agents i n their own lives, has been an important theme in both empirical and theoretical literature in the disciplines o f education, anthropology, geography, and sociology. However, in spite o f this attention to children's agency, considerable evidence demonstrates that children's opportunities to participate in the important matters o f their lives continue to be constrained. This place of intersection between the opportunities and constraints created by adults for children, and chronically ill children's agency within the contexts of their lives, is this focus of this project. Ensuring chronically i l l children's position as fully human beings, as important members o f families and communities, while ensuring their best interests are protected, is the central concern underpinning this research project.  In one sense, the debate I bring to attention here can be understood as the agencystructure debate that has been the subject o f much discussion in the field o f philosophy and its sub-discipline, ethics. While this debate remains salient and interesting, what is ethically and practically important i n this study is that these issues manifest i n real ways i n the lives o f real children. This study brings this tension into focus, particularly as it is embodied in the lives o f a particular group o f children: school-age children who live with chronic health conditions.  Focus of the Study Decisions as Sites of Analysis A t the outset o f this study, decisions were understood as sites in children's lives where multiple interests intersect and, hence, where ethically important dimensions o f children's experience might become visible. Decisions, defined by the New Oxford Dictionary of English (Pearsall, 1998) as "conclusion[s] or resolutionjs] reached after consideration," along with the corresponding processes o f decision-making, can be understood as analytic sites for the  -3 -  investigation o f ethical dimensions o f child-adult relationships. In this study, decisions i n the health care o f chronically ill children were seen as locations where adult views o f children and their interests, children's own intentions and desires, and other contextual dimensions come into 2  focus.  A s I have suggested, concerns related to the inclusion o f chronically i l l children in decisions regarding their own health care are largely rooted in beliefs about children's rights, including our societal commitment to ensure that children (like all people) have a say in matters that affect their lives. In keeping with Article 12 o f the U N Convention on the Rights o f the C h i l d (United Nations Children's Fund, 1989), professional guidelines and provincial legislation have focused attention on the inclusion o f children i n decisions about their health care (Government o f British Columbia, 1996; Registered Nurses Association o f British Columbia, 2000). While encouraging inclusion o f children in decisions, these guidelines also oblige the various carers o f children (including health care professionals and parents) to ensure that wise decisions are made, that children's "best interests" are upheld. It is at this juncture that the tensions among children's intentions and desires, their capacities and opportunities to express their views, and adults' perspective on what constitutes children's best interests in particular situations become visible. Seen this way, the participation o f children in decisions that influence their health care becomes an important ethical concern.  Throughout this thesis I use the phrase intentions and desires to capture what children have in mind or hope to bring about in specific instances. Searle (1983) distinguishes intentions and desires from other states of mind such as beliefs, hopes, and fears. Specifically, intentions and desires are identifiable by a mind-to-world direction of causation; they provide the starting point toward particular action. In this analytic philosophic approach, the term desires is considered weaker than the term intentions. Bratman (1987) suggests that intentions have a stronger motivational force and hence imply a greater commitment to action than desires. Secondly, intentions are more settled than desires; there is little space for deliberation between pros and cons when an intention is formulated. The distinctions between these two terms, however, are less important than the construct that the phrase is intended to capture as I use it throughout this thesis. Stated simply, intentions and desires refer to the scope of children's thoughts and feelings about what matters to them and what they want in relation to those matters. -4-  Childhood Chronic Illness, Decisions and Children's Participation Children with chronic illness are a particularly important group when we consider issues of participation and decision-making. First, this is a group for whom the experience o f chronic illness and the decisions related to the health care management o f the condition are often portrayed to significantly shape their life experiences. Secondly, these children and their families tend to have ongoing contact with the health care system and the care providers within that system; the consequences o f these interactions can have a profound effect on child and family health and well-being. Given the complexity o f the lives o f children with chronic illness, and the extent to which their voices might be suppressed, arguments have been made that these children not only have a right to be heard, but are deserving o f special measures to ensure their views are taken into account in matters that are important in their lives (Alderson & Montgomery, 1996; Brennan, 2002; Franklin & Sloper, 2007).  While I was primarily drawn to this topic because o f an interest i n the ethical dimensions of chronically i l l children's status in relationships with adults and within our health care systems, I was also interested in the relevance o f children's inclusion in the matters o f their lives for its influence on certain outcomes related to children's health and development. The importance o f fostering children's participation i n health care decision-making becomes evident when we consider that experiences in early life have lifelong-term effects within a wide range o f health outcomes, including the ability to manage life events competently and to cope with life stressors (Keating & Hertzman, 1999; Lerner, Fisher, & Weinberg, 2000). Recent work by Keating and Hertzman provides substantial evidence o f a relationship between stressors and the events o f early life (including how these are managed) and individuals' abilities to modulate and control responses to stressors in later life. Thus, we might surmise that supporting children to develop the skills and abilities they need to make decisions about their health care may well have  implications for health throughout their lifespans. O n a broader scale, it could be argued that knowledge that augments chronically i l l children's abilities to manage the events o f their lives may enhance health care effectiveness and efficiency (Bricher, 1999; de Winter, Caerveldt, & Koolstra, 1999).  3  While chronically i l l children's participation in decisions about their lives (including their health care) is important, it is also problematic. It is important because, as I have briefly outlined above, as a society we have agreed that children have a right to be heard in decisions; because, to varying extents, current policy requires that children's thoughts and wishes be solicited and taken into account in matters that significantly influence their lives; and because children's participation in decisions may have implications for long-term health outcomes. It is problematic because what constitutes children's participation is a matter o f debate, because children's rights to voice their opinions may clash with adults' responsibilities to ensure children's well-being and attend to their interests, and because determination o f children's interests is often a complicated endeavour. Recognition o f the importance o f this issue for chronically i l l children's health and well-being has resulted i n calls for research into children's participation in health care decisionmaking that may inform the practice o f health care professionals as they work with children (Jenson & Stroick, 1999; Mitchell, 2000; Priestley, 1998; Tipper & Avard, 1999). Additional knowledge about patterns o f children's participation in health care decision-making, and the conditions that support or hinder that participation, may assist us in our commitment to upholding the rights o f children and to meeting our goal o f creating conditions that foster improved health outcomes throughout children's lifespans.  Many decisions are made with and for children with chronic health conditions: discrete, formal decisions such as those about treatment and care, but also less formal decisions regarding 3  This remains a speculative claim, as there is little empirical research addressing this topic. -6-  the more day-to-day dimensions o f their existence. A s I have stated, at the outset o f this study decisions related to children's health care were held to be sites where children's intentions and desires would intersect with multiple other interests, and where adult perspectives on children would become visible. In chapter four, I portray how this view o f decisions as discrete sites available for analysis was challenged, and how, as the project progressed, my understanding o f decisions shifted.  T h e Research P r o b l e m and Questions The principle focus o f this study was the formal and day-to-day decisions made in the health care o f chronically i l l children: the conversations i n which children took part; the discussions and consultations between parents, health care providers, educators, and others, discussions to which the children may or may not have been privy; and the day-to-day negotiations o f family or institutional life in which health care decisions were formed and enacted. O f primary concern were the children at the centre o f these activities, their expressions of wishes and desires and the extent to which their voices were heard. The problem I sought to address had to do with the existing confusion around children's participation, and an insufficiency in existing knowledge addressing complexities o f decision-making i n the health care o f chronically ill children, specifically the issue o f children's participation in those decisions.  Several factors have shaped how I approached this problem. First, because research into decision-making with and for children with chronic illness is sparse, part o f the project was to describe this complexity, including a depiction o f the qualities children's contributions to decisions. Secondly, while we have a growing body o f research investigating children's experiences o f chronic illness from children's points o f view (e.g., Beresford & Sloper, 2003; Schmidt, Petersen, & Bullinger, 2003; Steele, 2000), little o f that research specifically addresses -7-  the question o f children's participation in health care decision-making. In relation to any investigation o f children's participation in decisions, it seems self-evident that children's own voices ought to be included. Because o f the extensive descriptive component o f this project, and because o f the necessity o f listening to children and others in order to comprehend the complexities o f children's participation in decision-making, a qualitative approach to inquiry was logical. I selected interpretive description (Thorne, Kirkham, & MacDonald-Emes, 1997; Thorne, Kirkham, & O'Flynn-Magee, 2004) as a methodology for this project because o f its support o f detailed description o f clinical problems such as children's contribution to decisionmaking, and its sustained focus on interpreting clinical problems in light o f the practical concerns o f health care practitioners. I detail my use o f this methodology in chapter three.  The following questions shaped the design and guided initial data collection in this project: 1. What do children think and feel about the formal and day-to-day decisions regarding their health care? 2. H o w do children's expressions o f intentions and desires related to specific decisions influence adult understandings o f children's interests? 3. H o w do adult understandings o f children's interests in particular situations influence the opportunities for chronically ill children to participate in decision-making related to their health care? 4. H o w do the social, economic, and political contexts in which decisions are made shape adult understandings o f children's interests and influence children's participation in decision-making? A s I describe in chapter three, this project has both longitudinal and cross-sectional components. This design was selected because o f the anticipated complexity o f decision-making in the lives o f chronically ill children, including the temporal and processural nature o f decision-making, and the fact that children's thoughts, feelings, and abilities might shift over time. The design was  intended to generate interactions with a small number o f individual children and their family members over a longer period o f time, as well as creating opportunities to investigate the views of a larger number o f children and their parents through briefer interactions. M y goal in planning the inquiry was to develop a rich description o f children's experiences o f participation, and to interpret what I learned about children's participation in light o f existing health care practice and policy.  Structure of the Thesis This thesis is comprised o f seven chapters. In chapter two, I summarize existing theory and research related to children's participation in health care decision-making, and I articulate the philosophical position o f the study. This location provides, to some extent, the rationale for many o f the methodological choices made in the design o f this study. I describe the methodology in chapter three, depicting how the research process unfolded, including details o f the sample, activities o f data collection, characteristics o f the data set, and the analytic processes.  The main findings o f the research are presented in chapters four and five. Chapter four provides a detailed description o f interpretations o f chronically ill children's participation in decision-making. I follow that description with a more conceptual analysis i n chapter five, in which I begin to imagine how we might simultaneously attend to the complex dimensions o f decision-making and participation, in ways that make visible morally relevant dimensions o f these activities.  Chapter six is devoted to a discussion o f the findings in light o f existing knowledge in the field, including accepted practices and current structures that constitute health care for chronically ill children and their families. In chapter seven, I consider the implications o f the findings for our work with chronically ill children and their families and outline what I believe to  -9-  be future directions for work in this field. In as much as decision-making with and for children is a complex and multifaceted process, so too are the implications o f the findings for adult-child interactions, including how practitioners practice with these children and families and the guidelines and policies that guide their practice. In this descriptive and interpretive process, I attempt to delineate the limits o f our knowledge and to highlight areas where additional research might be warranted.  Summary This thesis is m y account o f a project investigating chronically i l l children's participation in health care decision-making. The topic has its origins in practical and moral questions, primarily the problem o f what it means to foster chronically i l l children's participation in the many decisions that comprise much o f their lives, or more broadly, the ethical problem o f chronically ill children's standing as persons within our health care policies and practices. A wide range o f literature and theory informed my thinking as I entered this project, and shaped my approach to research. In chapter two, I present a synthesis o f this literature along with the philosophical underpinnings o f the study as a foundation for the methodology discussion that follows in chapter three.  -10-  CHAPTER TWO PHILOSOPHICAL, THEORETICAL, AND EMPIRICAL LOCATIONS OF THE PROJECT  Introduction The problem o f chronically ill children's participation in health care can be situated within various theoretical domains; it stretches across the fields ranging from the philosophical perspectives on children and childhood to very practical topics o f health care communication with children and families. A s such, the research problem led me to explore a range o f literature from a range o f disciplines, including nursing, medicine, social work, sociology, geography, and anthropology. In this chapter I review selected empirical and theoretical literature i n order to provide an overview o f what is known about the experience o f childhood chronic illness, about health care relationships in childhood chronic illness, and about theoretical approaches to children's participation. Having described the theoretical location o f the project, I conclude this chapter with a discussion o f the philosophic approach to knowledge and knowledge development that I have assumed in this project, and I begin to depict the influence o f that approach on methodological decisions.  Chronic Illness and Children Substantial evidence suggests that the prevalence o f chronic illness among children is significant and rising. Although there is no data for school-age children, data from the Canadian National Population Health Survey (1996-1997) indicates that 35% o f older children (aged 12 to 14) reported having some chronic health condition (Statistics Canada, 1999, p. 439). International data indicates that between 15% and 20% o f all children and adolescents live with a chronic condition o f some sort, whether physical, developmental, behavioural, or emotional (Newacheck et al., 1998). Precise numbers are not available, and those that exist are limited in their applicability by the different inclusion criteria they rely upon. Influencing the numbers o f - 11 -  children with chronic illness is the fact that the long-term survival o f many groups o f children with chronic conditions has greatly improved in recent years; consequently, children who might not have survived through childhood now live to adulthood. Hence, a substantial, and likely growing, number o f children live with chronic health conditions in British Columbia.  Defining Chronic Illness One o f the challenges in conducting research into the experiences o f chronically ill children has to do with the variability i n how the term chronic illness is defined. Other terms address related and often overlapping concepts, including the terms chronicity, disability, special needs, and developmental delay. While it is not so important that chronic illness be narrowly defined in this study, the more general orientation toward what is important about chronic illness is very important, and some o f this can be gleaned through various efforts to define the concept.  Early attempts to define and categorize childhood chronic illness tended to be based on certain medically distinguishable features o f disease condition, such variables as the duration o f the illness, time since diagnosis, and the severity o f effect on body systems. Mattson's (1972) definition, for example, defined chronic illness as "a disorder with a protracted course which can be progressive and fatal, or associated with a relatively normal life course" (p. 801) - a definition that relies on symptom duration as the key feature o f chronic illness. In an effort to move beyond the restrictions inherent in a purely medical definition o f chronic illness, Stein and colleagues (1993) advocated a noncategorical approach to defining chronic illness. They added criteria o f individual functioning to the definition o f chronic illness, which they defined as any health condition that (a) has a biological basis; (b) has lasted or is virtually certain to last for at least one year; (c) results in limitation o f function, activities, or social role; (d) depends on medications, special diet, medical technology, assistive devices, or personal assistance to compensate for or minimize limitation o f function, activities, or social role; and (e) creates a need for medical care, -  12-  psychological services, or educational services over and above the usual for the child's age, or requires special ongoing treatments, interventions, or accommodations at home or in school.  Cassell (1991) and Kleinman (1988) expanded this view o f chronic illness to suggest that what is important about chronic illness becomes visible through the experience o f the individual. According to Cassell, chronic illnesses "are the set o f disordered function, body sensations, and feelings by which persons know themselves to be unwell" (p. 49). Others have illustrated that chronic illness experience is largely constructed within the social context o f health care (Thorne, 1993), and that experiences o f chronic illness may have as much to do with opportunity and constraint within relationships and structures as with the medical dimension o f various health conditions themselves.  Drawing from these various perspectives on chronic illness, in this project I viewed children's chronic illness as a child's embodied experience of a long-term disturbance in the structure and function of a bodily organ or system, and of the constructed meanings of that condition within the relational contexts of the his or her life. In one sense, this definition o f chronic illness leads into many bodies o f literature that may contain topics relevant to considerations o f children's contributions to decisions. A m o n g these might be topics o f how the meaning o f chronic illness shapes children's intentions, what family coping and adaptation means for health care decision-making, how stigma decreases options available to children, and how power dynamics within children's relationships with parents and health care providers may shape their chronic illness experience.  The body o f research and theory in these areas is vast, especially i f we consider that some of the research and theory addressing adult chronic illness may also have relevance for children. Not only is this body o f literature large and diverse, but, because o f the diversity, it is difficult to  - 13 -  analyze and summarize how it might be relevant in inquiry into decision-making in childhood chronic illness. A s an example o f this challenge, i n a metastudy o f qualitative studies addressing various aspects o f living with chronic illness, Thorne and colleagues (2002) were unable to derive core knowledge about the chronic illness experience. In their words, efforts to analysis existing qualitative studies was somewhat akin to staring through one o f those mirrored kaleidoscopes that uses glimpses o f the real world to create an infinite set o f new pictorial images in an endless constellation o f new configurations, (p. 439) Although my look across the literature addressing childhood chronic illness was far less systematic and thorough than Thorne and colleagues' metastudy, I was equally boggled by the array o f theoretical and conceptual perspectives that confronted me in this body o f literature. So, as I gaze through the kaleidoscope o f theory and research addressing children's chronic illness experiences, I have select two areas o f research that I believe might have relevance in this inquiry into children's participation. The first is literature about stress, coping, and adaptation, and I delve into these i n order to make these concepts accessible within this inquiry. Secondly, I summarize key research and theory addressing the relationships between health care providers and children and families.  Decision-Making, Coping and Adaptation in Childhood Chronic Illness A large and important body o f literature addresses children and families' experiences o f chronic illness from a stress and coping perspective. Research with chronically i l l children has tended to focus on attributes and factors related to the child, the illness, or the social situation that shape the child's capacity to manage his or her illness. Concepts including social competence (Breitmayer, Gallo, Knafl, & Zoeller, 1992), social support (Ellerton, Stewart, Ritchie, & Hirth, 1996), and cognitive appraisal o f stressful events (Theis & Walsh, 1999) have been described as specific determinants o f children's experience o f chronic illness, particularly - 14-  their ability to cope with or adapt to the condition (Stewart, 2003). In general, children are better able to manage their health conditions when they have extensive family support; when their social competence is adequate; and, like adults, when they are able to assign positive meaning to the difficult and stressful events o f their lives.  Family coping has also been a matter o f intense interest (Hayes, 1997). Family attributes that shape child and family adaptation, including the meaning o f the illness to family members, social support, family style, financial resources, family coping strategies, knowledge o f the child's condition, and the burden o f care, have been identified as important influences on child and family adaptation (Canam, 1993; Gallo, 1991; Gravelle, 1997; Knafl, Breitmayer, Gallo, & Zoeller, 1996).  Eiser (1993) problematized the deficit approach that tends to characterize research into children's and families' experiences o f childhood chronic illness, suggesting that research and theory have "focused on the negative consequences o f chronic disease, and individuals are often given little opportunity to describe their strengths and coping resources" (p. 8). This concern is echoed in Hayes's (1997) call for research with children and families that attends to much more than the deficits associated with the condition, and that focuses on considering families " i n all their diversity, contextualization and health" (p. 281). So, while support systems, patterns o f coping, and available resources may well be important in this inquiry into participation in chronic illness decision-making—and family dynamics are no doubt a vital consideration— notions o f diversity, relationship, context, and health deserve equal attention, and may prove to be important analytic lenses when child and family management o f chronic health conditions comes into focus.  Health Care Relationships and Decision-Making in Childhood Chronic Illness Health care relationships constitute important relational contexts for decision-making in children's health care, and are often understood as sites where children's participation may be supported or constrained. A wide range o f concepts attend to dimensions o f health care relationships, among which are theoretical topics variously framed as communication and collaboration (O'Connor, Morgenstern, Gibson, & Nakashian, 2005), partnership (Alderson, Sutcliffe, & Curtis, 2006), or parental participation in care (Johnson & Lindschau, 1996). Most influential, however, is the predominant and often overriding discourse i n children health care: that of family-centred care. A t the heart o f the family-centred movement is the notion that families must be supported in their position at the centre o f health care for their children; family members are not only the constants within the children's life, parents also become experts in the care o f their children (Chernoff, Ireys, DeVet, & K i m , 2002; Institute for Family Centered Care, 2006).  Family-centred care emerged in the consumer and family support movements o f the 1960s, largely in response to the disjuncture between practices and policies within health care for children and families' experiences, expertise, and needs. The gulf between these perspectives had resulted in the exclusion o f family members from much o f children's health care, and manifested in policies such as restricted visiting hours and other paternalistic practices within health care relationships. A s the movement gained momentum through subsequent decades, several conceptual models o f family-centred care emerged (Casey, 1993; Gabe, Olumide, & Bury, 2004), the most influential o f which continues to be that originally published in 1987 by the Association for the Care o f Children's Health (Shelton, Jeppson, & Johnson, 1987; Wertlieb,  - 16-  2003). The widely accepted principles o f family-centred care promoted by this group gradually 4  gained a place in the policies and standards that shaped health care for chronically i l l children today (Johnson, 2000). Currently, in several health care jurisdictions, family-centred care has been declared a standard in paediatric health care (American Academy o f Pediatrics Committee on Hospital Care, 2003). It is generally viewed as an essential philosophy across health care settings, finding its way into hospital mission and vision statements and into standards and guidelines for practice with children (e.g., Capital Health, 2006; SickKids, 2006).  The bulk o f the literature related to family-centred care when children have chronic illness has focused on the experience o f parents, with emphasis on the extent to which parents are involved in the care o f their children. In an influential review o f research and theory addressing family-centred care, Dunst and Trivette (1996) concluded that family-centred care practices can be deemed effective when characterized by "positive relational features"—a view o f children and parents "as having existing capabilities as well as the capacity to become more competent"—and when parents are "actively and meaningfully" involved in care practices (p. 336). M a n y studies draw attention to the challenges inherent i n enacting parental participation in children's care: issues o f role stress, difficulties in negotiating across difference, power struggles, and policy limitations (MacKean, Thurston, & Scott, 2005). Letourneau and Elliott's 5  (1996) research with professionals portrays an interesting problem in the enactment o f familycentred care principles: that although most nurses in their sample claimed to value family-  4  The core principles of family-centred care evolve from the belief that the family has the greatest influence over an individual's health and well-being, and that, because of this influence, families must be supported in their roles as caregivers. While the principles vary slightly between approaches to the philosophy, principles of dignity and respect for all human beings, positive communication strategies in interactions with children and families, and a focus on individuals' and families' capacities rather than deficits are prevalent in all definitions (Ahmann, 1994).  5  In research with parents of children with chronic illness, Knafl and colleagues (1992) found these power struggles manifest in patterns of communication that undermined parents' confidence. A parent's perception of a lack of respect or compassion on the part of the health care provider was particularly damaging to the health care relationship. -17-  centred care, a significant discrepancy existed between those espoused principles and actual practice with children and parents. However, as Franck and Callery (2004) articulated, familycentred care has been theoretically developed in the literature and a substantial number o f studies have added to our understanding o f specific dimensions o f practices o f family-centred care. In spite o f this rather large body o f theory and research, family-centred care as a comprehensive model o f care is principally descriptive, and few studies have tested the theory or care delivery models.  Although it would seem that the enactment o f family-centred principles within health care interactions would bode well for children's participation, how children contribute to health care matters is not often addressed i n this literature. Differences between the perspectives and interests o f children and their families create an interesting tension not well addressed in the family-centred care literature. Recently, researchers who have noted that attention to children's own views is largely absent from this discussion about health care relationships in general, and family-centred care in particular, have begun investigation into what it might mean for children to be partners with adults in their care (Alderson et al., 2006). It is at this juncture that familycentred care research and theory intersects with research and theory addressing children's participation.  Children and Children's Participation What constitutes children's participation and what are the conditions in which that participation is facilitated or constrained? This question has been the subject o f theoretical and empirical inquiry across several disciplines and, i n the philosophical domain, has been developed as an important topic o f ethical inquiry. A s the discourse o f children's participation has become more prominent, two separate yet related literatures have enierged. The first has to do with children's participation i n democratic processes: that is, their participation in the organization - 18-  and operation o f the institutions that affect their lives. The second is more closely related to this inquiry, and addresses children's contributions in the more private matters o f their lives. M a n y o f the models and theories o f children's participation transcend this distinction, and in this review of the literature, I include both as theoretical views within each have relevance to this project.  Theories and Models of Children's Participation Developmental perspectives on participation The earliest, and arguably still the most influential, theories related to children's capacities to participate in decisions come from within fields o f developmental science, particularly the works o f Piaget (1969), Erikson (1963), and Kolberg (1968). Based on their research with children, these theorists described how children's capacities to contribute reasonably to decisions are shaped by their cognitive, emotional, social, and moral development. Simply stated, school-age children's thinking is characterized by concrete rather than abstract thinking. Further, they tend to judge the Tightness or wrongness o f an action by its direct 6  consequences to themselves rather than by evaluating behaviour i n relation to societal views and expectations. These important beginnings from developmental science have had a profound 7  influence on our conceptual view o f children's ability to engage i n decisional processes. From  6  Piaget (1969) was  a developmental biologist w h o s e w o r k has been particularly  influential. T h e  stages  o f intellectual d e v e l o p m e n t he p r o p o s e d w e r e , he b e l i e v e d , c l o s e l y r e l a t e d to m a j o r d e v e l o p m e n t s brain g r o w t h t h r o u g h o u t c h i l d h o o d . A s t h e y enter the  school-age years, children  are j u s t  the " p r e o p e r a t i o n a l p e r i o d " o f intellectual d e v e l o p m e n t . D u r i n g that p e r i o d , c h i l d r e n  gradually  b e c o m e less e g o c e n t r i c in their v i e w o f the w o r l d , a n d d e v e l o p b a s i c c o n c e p t s for t h i n k i n g these remain children  elementary and crude). Throughout  p r o c e e d t h r o u g h the p e r i o d  a n d l o g i c a l . T h e y d e v e l o p the a b i l i t y to p e r f o r m  start m o v i n g i n t o the p e r i o d o f " f o r m a l  m o r e abstract, a n d children 7  organized logical  school-age years (beginning about  operations"— a time w h e n thought  addressed by K o h l b e r g (1968). Within Kohlberg's  logic. theory,  are e x p e c t e d to be in a p r e - c o n v e n t i o n a l l e v e l o f m o r a l r e a s o n a b l e n e s s . In  decisions about actions, school-age children  p e r c e i v e s to be in his or her o w n  making  are l i k e l y to f o c u s o n the d i r e c t c o n s e q u e n c e s their  actions w i l l h a v e for t h e m s e l v e s a n d to define right b e h a v i o u r in a c c o r d a n c e w i t h w h a t the best interests.  -  19-  age  becomes  h a v e the c a p a c i t y to b e g i n to i n c o r p o r a t e the p r i n c i p l e s o f f o r m a l  This question o f moral development was school-age children  as  becomes more  m o r e c o m p l e x i n t e l l e c t u a l a c t i v i t i e s , s u c h as  s e q u e n c i n g a n d m u l t i p l e classification. T o w a r d the e n d o f the eleven), children  (although  the s c h o o l - a g e y e a r s , P i a g e t c l a i m e d that,  o f "concrete operations," their thinking  in  completing  child  this developmentalist perspective, school-age children are seen as in the process o f becoming independent, autonomous beings capable o f rational choice, not yet fully capable o f consistently sound judgement.  8  Following the direction o f these theorists, early research in developmental psychology ' continued to investigate the cognitive, moral, and social competencies o f children (e.g., Ferguson, 1978; Grisso & Vierling, 1978). Consensus exists among these theorists that children need a certain level o f reasoning ability and emotional maturity to demonstrate the kind o f competence necessary to make reasonable decisions. Grisso and Vierling added four characteristics that are prerequisites to competent decision-making. The individual must be able to demonstrate:  (a) the capacity to sustain one's attention to the task, (b) [the] ability to delay response in the process o f deliberation, (c) [the] ability to think in a sufficiently differentiated manner to weigh more than one treatment alternative and set o f risks simultaneously, and (d) [the] ability to employ inductive and deductive forms o f reasoning (p. 418). In this way, as the field o f developmental psychology became more sophisticated, a more complex normative understanding o f children's capacities became available to professionals.  Limits o f developmental theories as guides to children's participation i n health care decision-making, however, became apparent in the early 1980s with the work o f Weithorn and Campbell (1982). Other important critiques o f developmental approaches to children's moral and cognitive capacities came from the work o f feminist researchers and writers, particularly Gilligan (1982) and Belenky, Clinchy, Goldberger, and Tarule (1986). These authors were particularly  8  Erikson saw the development of a sense of autonomy as a key task of childhood growth and development, a task that is first evident in "stubbornness" of toddlerhood and continues and is seen in the self-actualization effort of adults (1963). In Erikson's view, autonomy (as the marker of successful development) stands in opposition to shame and self-doubt. -20-  concerned about the gender bias within existing developmental theories, and the consequent silencing o f the voices o f girls and women.  Subsequent research has clarified that experience, rather than development, may represent the critical determinant o f competency i n decision-making. Research with adults with chronic health conditions has shown that individuals' abilities to make sound decisions gradually develop with time and experience (Ellison & Rayman, 1998; Paterson & Thorne, 2000; Price, 1993). There are suggestions that this development o f expertise over time may well hold true for children in a similar way. Several investigations o f children with chronic health conditions have shown that children's capacities to make reasonable decisions are influenced as much by factors such as emotional state and previous experience as by chronological age or stage o f cognitive maturity (Alderson, 1993; Dorn, Susman, & Fletcher, 1995).  Contextual perspectives on participation Within this context o f a critique o f developmental perspectives o f children's capacities, researchers in various fields began to take a different direction, shifting the focus from individual children's competence toward an understanding o f children's capacity and opportunities i n particular social and relational contexts. Hart (1992, 1997) was concerned with the absence o f children in the development o f community programs and policies. Adapting Arnstein's (1969) ladder o f participation to the case o f children, he proposed a model o f a ladder with eight rungs 9  to represent degrees o f children's participation in democratic processes: each rung represented a level o f children's increased agency, from no agency at the lowest rung o f manipulation, to full  9  A r n s t e i n ' s ( 1 9 6 9 ) ladder o f p a r t i c i p a t i o n is an i m p o r t a n t , n o w c l a s s i c , w o r k i n the f i e l d o f h u m a n rights a n d d e m o c r a t i c c i t i z e n s h i p . H e generated a t y p o l o g y o f c i t i z e n p a r t i c i p a t i o n — a l a d d e r w h e r e e a c h r u n g c o r r e s p o n d s to the extent o f i n d i v i d u a l s ' p o w e r i n i n f l u e n c i n g d e c i s i o n s . T h e l o w e s t r u n g is labelled  manipulation,  a t o k e n s o l i c i t a t i o n o f v i e w s w i t h o u t intent to i n c o r p o r a t e those v i e w s w i t h i n  the d e c i s i o n a l p r o c e s s . T h e h i g h e s t r u n g is  citizen control,  governance.  -21 -  where individuals assume control and  agency at the highest rung, characterized by child-initiated, shared decisions with adults. In promoting children's participation, Hart is very clear that he is not advocating that children should always operate at the highest rung o f the ladder, but rather that they be offered the opportunity and choice to participate at the highest level o f their abilities.  Research by Thomas and O ' K a n e (O'Kane, 2000; Thomas, 2000; Thomas & O ' K a n e , 1999) and others (Munro, 2001; Murray & Hallett, 2000) has demonstrated that children's participation i n decisions is not only a product o f the child's state o f development, but is influenced by the context in which particular decisions are made. These authors' research with children " i n care" brought attention to relationships between institutional structures and children's abilities and opportunities to participate i n decision-making, as well as the multiple ways in which decisions are negotiated and decided in relationships with caregivers and professionals. A l s o prevalent in the findings from these studies are the multiple ways in which children's opportunities to contribute to decisions vary according to age, gender, background, and personal characteristics. In this work, Thomas and O ' K a n e extended and adapted Hart's (1997) ladder o f participation. They found that patterns o f children's participation are complex, they are less linear and more multidimensional than is captured in the ladder metaphor. Implicit in a model that ranks levels o f participation (such as Hart's) is the assumption that one person's participation can be ranked unequivocally as more or less significant or substantial than another's. In his research, Thomas shifted the focus from degrees o f individual agency toward a model that takes into account many individual, relational, and contextual factors. A m o n g these factors were considerations o f how well the child understands the issues at stake, the reasons why certain decisions have already been made, how much choice the child has in who he or she speaks to, where conversations take place, the child's options to choose to participate in the process or not, the child's understanding o f the context wherein decision-making is located, and  -.22-  whether the child knows how to challenge the decisions that have been made or opinions that are being expressed. In an effort to incorporate these complexities into a model o f children's participation useful to social work practitioners, Thomas proposed a new typology o f participation. This typology is not rank-ordered and acknowledges that any child's involvement may be strong i n some aspects and weaker i n others. Thomas's model includes six key domains o f children's participation: 1. the choice the child has over his or her participation 2. the information he or she has about the situation and his or her rights 3. the control he or she has over the decision-making process 4. the voice he or she has in any discussion 5.  the support he or she has in speaking up  6. the degree of autonomy he or she has to make decision independently Thomas's work marks a movement toward a more contextual and relational approach to children's participation. This perspective not only acknowledges the influence o f child development and emphasizes the centrality o f children's agency, but also draws attention to dimensions o f particular decisions and their contexts that may have important implications for participation.  Children's Participation from an Ethical Perspective A t what age are children competent to consent to treatment? W h o rightfully makes decisions on behalf o f children? H o w do we determine what constitutes children's best interests? These are questions o f an ethical nature, questions that have been addressed in a number o f ways within the existing literature. Here I explore three interrelated topics, each o f which casts a somewhat different light on inquiry into children's participation in decisions: children's moral status, children's autonomy, and children's interests.  -23 -  Do children hold moral status? The ethical term moral status has been used by some theorists to explore the political and social position o f individuals and groups o f individuals in relation to others. This concept is useful in drawing attention to the complexities o f children's opportunities i n our society, making explicit some o f our society's commitments to children and drawing attention to how these commitments might be differently understood and interpreted in different contexts (Arneil, 2002; Brennan & Noggle, 1997; Schrag, 1977). In her conceptual analysis, Warren (1997) illustrates clear linkages between how we think about a group o f individuals and how we understand our moral responsibilities toward that group: " T o have moral status is to be morally considerable, or to have moral standing. It is to be an entity toward which moral agents have, or can have, moral obligations." She goes on to describe how moral status granted to any individual shapes others' orientation toward that individual, linking moral status to what might be understood as personhood or fully human status: " I f an entity has moral status, then we may not treat it in just any way we please; we are morally obligated to give weight in our deliberations to its needs, interests, or well-being" (p. 3).  Theorists from diverse disciplines have concerned themselves with questions about children's positions in our societies: considering the capacities and opportunities o f children; critiquing how children's lives may be constrained by the political, social, and physical environments in which they live; and grappling with the moral dimensions o f adult-child relationships. Literature from various disciplines, including philosophy, political science, sociology, and psychology, examine these questions from different perspectives. Within and across these perspectives, an interesting and challenging paradox becomes apparent. O n one hand, children are understood to have very strong moral status, and adults carry a correspondingly weighty responsibility to provide for children's needs, to protect them, and to  -24-  support their development. Alternatively, others claim that the way children are generally treated is evidence o f children's weak moral status (Alderson & Montgomery, 1996; Lansdown, 2000). For example, in relation to children's participation in decision-making, adults are not compelled to attend to children's perspectives or foster their participation i n matters that affect their lives, and consequently (some claim) rarely do so. Writing about the problem o f children within the American health care system, particularly the legal issues that arise, M o h r and Kennedy (2001) summarize this problem, suggesting that "children occupy an indeterminate position between property and constitutionally protected citizen" (p. 196). While the legal position o f children i n Canada is somewhat different, many o f the social and cultural factors that influence children's moral status are similar. In considering matters o f children's participation, notions o f moral status lead to questions o f how different groups o f children are assigned different degrees o f worth, and a critique o f how the status o f children varies according to ability, diagnosis, gender, race, age, appearance, and socioeconomic status—important questions in the analysis o f this project.  To what extent are children autonomous beings? Questions o f children's participation are sometimes interpreted as questions o f children's autonomy—a much-contested topic—and contrasting views o f the concept o f autonomy populate the literature. Predominant in the literature is a conventional view on autonomy, summarized by Sherwin (1998) as the individual's capacity to: (a) be "sufficiently competent" to decide, (b) choose reasonably from the available options, (c) obtain adequate information and demonstrate understanding o f the information related to the options available, and (d) not be coerced by others. Conventional developmental theories, as described earlier, have provided the theoretical foundation o f this view o f autonomy. Erikson (1963) and Kohlberg (1968), through their stagelike approaches to children's moral and social capacities, cast autonomy as the ideal toward  -25 -  which much o f children's development is directed. From dependence to autonomy, from irrationality to independent rational moral agents, school-age children find themselves granted some sort o f incomplete agency.  A n alternate view o f autonomy, advanced by Sherwin and others (Mackenzie & Stoljar, 2000; Sherwin, 1998), is a relational approach to understanding autonomy, a move away from a strongly individualistic view o f what it means to be a competent human being. These challenges to conventional perspectives on autonomy represent, in part, a reaction to the dominance o f Kantian individualism and the perceived link between this view o f human existence and claims o f invariant developmental sequencing in child development (Gilligan, 1993; Sherwin, 1998). From a standpoint that autonomy is relational, personhood is understood as at least partially constructed within particular human relationships; autonomy is "a capacity or skill that is developed and constrained by social circumstances" (Sherwin, p. 36). Research in this area has shown that children's capacity to participate in decision-making may be linked to the nature and style o f their relationships with parents, professionals, and other adults (Brown & Gilligan, 1992; Munro, 2001; Woodgate, 1998b), suggesting, for example, that autonomy and competence are related as much to context as to the cognitive and social maturity o f the individual child. For these reasons, these theorists advocate a more relationally composed understanding o f autonomy. The now classic work o f Gilligan (1993), whose research addressed the development o f girls and women, has been in the forefront o f this thinking. Gilligan suggests that individual cognitive and moral autonomy (particularly as represented by Kohlberg [1968] and Erikson [1963]) ought not to be seen as universal goals o f development, and that, i n fact, this ideal has lead to the systematic oppression o f girls and women in western cultures.  Although Sherwin's (1998) critique o f individualistic perspectives on autonomy is less scathing than the critique advanced by Gilligan (1993), she draws our attention to the need for a  -26-  broader understanding of what this concept might mean in health care decision-making, introducing a concept that she labels "relational autonomy." From this standpoint, Sherwin defines autonomy as "a capacity or skill that is developed (and constrained) by social circumstances. It is exercised within relationships and social structures that jointly help to shape the individual while also affecting others' responses to her efforts at autonomy" (p. 36). A relational understanding of autonomy forces us to reconsider a view of children's capacities for autonomy as purely individually determined, and prompts consideration of how a child's autonomy and voice intersect with, and are at least partially determined by, relationships with important others, as well as by the physical, social, and political contexts within which decisions are made. This adds an important dimension to thinking about children's capacities for participation in decision-making. From a relational perspective, legitimate decisions are not only those made in isolation, but include decisions made in association with significant others.  What constitutes children's best interests? Conventional wisdom about children's autonomy and rights closely links these to notions of children's interests. Our society's shared statement of children's rights as depicted in Article 12 of the UN Convention on the Rights of the Children (United Nations Children's Fund, 1989) makes explicit "that States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child." While advocating children's participation, the Convention also frames children's rights to protection and care in the declaration that in all decisions, "the best interests of the child shall be a primary consideration." In decision-making related to children's health care, professionals (with children's parents and guardians) have responsibilities to foster children's participation while ensuring that the decisions attend to children's best interests. This tension between participation  -27-  and protection deserves attention in any inquiry addressing decision-making with or for children.  Children's interests are generally understood to be that which is judged to profit a child, a group o f children, or children in general the most. Judgements o f best interests are sometimes measured according to an objective "reasonable person standard," wherein a view o f best interests is detached from the particular individual's intentions and desires (Beauchamp & Childress, 1994; Kluge, 1992). Beauchamp and Childress describe limitations to this approach to judging best interests. The difficulty o f determining, in many instances, what a reasonable person would want, is linked to questions o f who holds the authority to make that judgement.  Recognizing the centrality o f parents in children's health care decision-making and the limitations o f a best interests standard in determining children's care, Ross (1997, 1998) endeavours to create an approach to decision-making with or for children that does not hold parents simply to the best interests standard. She calls for a standard that allows parents more flexibility, that recognizes that privileging what might be understood by some as the ill child's so-called best interests may not be the most reasonable decision for the child as a person, as a family member, or as a member o f a community. She advocates an approach o f "constrained parental autonomy": parents are positioned in a sort o f surrogate decision-maker position, wherein matters o f importance are not reduced to interests and needs, and the child's interests, while a vital component o f decisional processes, are not privileged over all other considerations.  Elsewhere, my colleagues and I (McPherson et al., 2004) have advocated a broader understanding o f children's interests than that traditionally depicted in the biomedical ethics literature, a perspective that synthesizes considerations o f children's rights, needs, and relationships. Notions o f children's interests have importance in this project when concepts o f  -28-  autonomy, competence, and consent arise. In making judgements about children's interests, adults are asked to take into account children's own wishes and desires while ensuring wise judgements are made, to respect children's rights while protecting them from harm. Given these often competing obligations, it is not surprising that how and when children ought to contribute to decisions is a matter o f interpretation, emphasis, and debate.  Children's Contributions to Health Care Decisions In recent years, several authors have engaged in research regarding the inclusion o f children in health care matters and the relative outcomes o f such endeavours. In these works, various perspectives exist on the construct o f children's involvement i n health care matters. What children contribute to their health care has been cast variously as children's participation i n health care (Franklin & Sloper, 2004), consultation with children (Coyne, 2006), involvement in health care decisions (Angst & Deatrick, 1996), and participation in decision-making processes (Runeson, Hallstrom, Elander, & Hermeren, 2002). In this section, I explore theory and research within this construct o f children's involvement in health care matters, focusing on existing knowledge on the topic o f consent to treatment, as well as on the less formal and often less discrete decisions that characterize day-to-day care for many children with chronic health conditions.  Children's consent to treatment O f the gamut o f decisions that are made in children's health care, those that receive most attention in theory and research tend to be the more formal decisions about treatments and procedures for which informed consent is generally required: for example, decisions to provide or stop treatment, or to conduct invasive procedures or surgery (Alderson, 1993; Angst & Deatrick, 1996; Dorn et al., 1995). Children's consent to treatment and care has been the subject of extensive debate among theorists and practitioners, and discussion related to these decisions -29-  tends to centre on legal, political, and professional obligations o f parents and professionals in the context o f the care o f particular children. When issues o f children's contributions to these decisions arise, discussion tends to focus on whether the children should participate or not, and how that participation w i l l be determined. In this area, the majority o f literature has been developed theoretically; empirical research is sparse.  Questions o f children's competency in decisions are foundational to debate about children's consent. The topic o f patient expertise has been addressed i n various ways i n the chronic illness literature. This topic is important i n this inquiry into children's participation i n heath care decision-making because it speaks to the critical issue o f children and parents' competence i n decisional matters. Research by Thorne, Patterson, and Russell (2003) revealed that people living with chronic illness tend to develop a very practical and specialized knowledge over time, knowledge developed through experience rather than through exposure to standardized theory and procedure.  There is reason to believe that children and their parents develop knowledge i n similar ways, and such knowledge about the development o f expertise has important implications for children's participation in health care decision-making. Investigations into the experiences o f children with specific diseases such as cancer (Woodgate, 1998b), diabetes (Grey & SullivanBolyai, 1999), asthma (Yoos & M c M u l l e n , 1996), and rheumatoid arthritis (Berry, Hayford, Ross, Pachman, & Lavigne, 1993) suggest that children and their parents may i n fact develop this kind o f expertise over time, although none o f these studies addresses how the characteristics of specific illness experiences shape children's participation in decision-making. Although such specific dimensions o f decisional processes were not the prime focus o f the study in its early stages, exploring dimensions related to children and parents' expertise—including how children's contributions to decision-making varied over time, how the social legitimacy o f the -30-  disease influenced perceptions o f children's knowledge, the impact o f the illness on day-to-day life, and the nature o f the treatment regimen—became important analytic filters as this project proceeded.  A particularly important work in this area is Alderson's 1993 publication, "Children's Consent to Surgery." Through interviews with 120 children ages 8 to 15 years o f age, Alderson explored children's abilities to arrive at informed, wise decisions about surgery. Her results 10  showed that children's ability and desire to be involved in decisions about surgery varied, and that respecting children meant supporting them to participate to the extent they desired, preventing children's undesired over-involvement, but at the same time avoiding exclusion. She found that many children were inclined to accept their physicians' or parents' decisions; others wanted to be fully involved in decisional processes; yet others expressed a wish to be the main decision-maker regarding their surgery. Summarizing her findings about children's competence, Alderson writes: Competence to consent is not a fact, and it does not appear to develop evenly and gradually. Competence has more to do with qualities, experiences, and perceptions. It is affected by the child's inner qualities (abilities, memories, and confidence) and by outer influences (the nature and circumstances o f the decision, its salience to the child's concerns, the adults' expectations and information, their support and respect for the child), (p. 193) This multifocal view o f children's competence is not reflected in the majority o f literature influencing policy and practice with children. In British Columbia, the standard for eliciting children's views and evaluation their competence is embedded in the Infant Act, passed by the B C government in 1996 (Government o f British Columbia, 1996). This act states that children o f any age may consent to treatment and care, and, i n instances where children's consent is valid,  10  The health conditions for which children in Alderson's study underwent surgery were generally orthopaedic in nature and included scoliosis, short stature, hip dislocation, and malformation secondary to muscular dystrophy and cerebral palsy. -31 -  consent from the parent or guardian is unnecessary. The conditions o f validity for this consent reflect the double bind described earlier. In Section 17, the act states that: A request for consent, agreement or acquiescence to health care by an infant does not constitute consent to the health care ... unless the health care provider providing the health care a.  has explained to the infant and has been satisfied that the infant understands the nature and consequences and the reasonably foreseeable benefits and risks of the health care, and  b. has made reasonable efforts to determine and has concluded that the health care is in the infant's best interests. The tension between protection and participation is unresolved in this act and in the various endeavours to translate it into policy. The stalemate created when this tension manifests in practice is also largely unresolved, and children's consent to treatment and care remains primarily in the hands o f adults.  Day-to-day decisions in children's health care Another (often overlooked) group o f decisions made i n the health care o f children are the day-to-day decisions that are generally not considered in discussions o f informed consent. These are the less-formal decisions that constitute much o f the management o f many health conditions. Decisions such as those addressing nutrition, activities o f daily life, and pain management, tend to be o f this sort. A n example o f an effort to make some o f these day-to-day decisions more visible can be found in research by Collins (1999), who investigated the practice o f restraining children for painful procedures. Within health care settings, restraining a child generally does not require the specific consent o f the child or the parent(s), and is considered to be a discretionary decision on the part o f the health care practitioner. Whether or not restraining a child ought to require consent, or if, because the child is obviously not consenting, we should take the view that restraint is a violation o f a child's autonomy and dignity (and consequently a threat to their  -32-  integrity), is a matter o f debate! What Collins's research accomplishes is to bring these lessformal decisions.—everyday experiences for many children with chronic illness, for their parents, and for the health care providers who work with them—into the arena o f discussion o f children's participation in decision-making. To date, where these discussions about children's participation in either formal or day-to-day decisions take place, children's participation continues to be viewed as a dichotomy; either they are to be allowed to consent to care, or not.  Descriptive research by Angst and Deatrick (1996) into the involvement o f children in decisions about their health care showed that children's involvement varies based on the type o f the decision (children tended to be included i n discussions about surgery, but excluded from more day-to-day decisions). Recent qualitative studies with children i n hospitals have endeavoured to capture some o f the nuances o f participation in decisions not usually considered in discussion o f informed consent. In an observational study o f 24 hospitalized children (ages 5 months to 18 years), Runeson and colleagues (2002) found that children are not always allowed to participate in instances where their participation seems reasonable." Through non-participant observation, situations related to children's participation were identified and grouped according to levels o f participation, ranging from a failure to listen to the child's wishes to full implementation o f the child's wishes and desires.  12  This is important work, as it begins the  In this study, analysis is based on 186 situations in which the researchers deemed children might reasonably be involved. Judgements of children's participation were based on action or inaction within the immediate decisional context. The instrument, developed by Hermeren (as cited in Runeson, 2002), grades situations into 5 levels of participation in decision-making: 1) A (A=member of the staff) does not listen to B's (B=child) opinions, wishes, and valuations. 2) A listens but refuses to discuss the opinions of B with B; no consultation, no two-way communication takes place. 3) A communicates with B but does not care about B's answer; B's opinions, wishes, and valuations do not influence the actions of A. 4) A cares about what B says but acts only partially in accordance with B's opinions, wishes, and valuations. 5) A acts in accordance with B's opinions, wishes, and valuations, (p. 589) -33 -  project o f investigating children's contributions to everyday sorts o f health care decisions, and points to a degree o f exclusion o f children i n these situations. A n assumption embedded in this study—one that had important implications for the conduct o f my investigation into children's participation in chronic illness decision-making—was related to the researcher's judgements about children's participation. The researchers assumed that what is seen i n the moment o f observation, what researchers can learn from listening and watching, provides sufficient evidence to judge children's participation. While much might be visible i n these moments o f observation, I am left to question how the nature and extent o f children's participation might have been differently interpreted i f the complex relational and contextual dimensions had been more fully understood. A s I explain in chapter three, the methodology for this study included interaction with children and parents and observation o f health care encounters i n an effort to begin to understand something about the relational and contextual nature o f children's decisionmaking.  A Pragmatic Approach to Knowledge Development Given the breadth and scope o f knowledge development related to children's participation i n chronic illness decision-making, and given the practical origins o f the questions that I am asking, I realized that inquiry in this area could follow several paths. In considering knowledge and its relationship to health care practice with children and their families, I have been enticed by the works o f pragmatic philosophers—particularly Bernstein (1983, 1992), but also Rorty (1999), and Dewey (1927, 1931). In part, this attraction is linked to pragmatism's 13  emphasis on the practice origins and the action orientation o f knowledge—its perspective that knowledge is not merely abstract and theoretical but is always practically and morally manifest  13  Although I write in general terms about pragmatism, I recognize that within that tradition, great diversity exists. Perhaps the starkest distinction is between the traditional pragmatism and neopragmatism. I discuss this distinction below. -34-  in the lives o f human beings. From a pragmatic standpoint, "what works" i n the resolution o f particular human problems becomes the standard for truth and justice (Bernstein, 1983, 1992; Rorty, 1999). "Truth" about chronically i l l children and decision-making, is measured by the extent to which the knowledge claims are derived from the human problem o f children's contribution to decisions and by the extent to which the knowledge generated usefully informs our thinking about children's participation. In this way, as Doane and Varcoe (2005) articulate, "Pragmatism does not stand for any special results. It is only a process" (p. 82).  This focus on the practical contributions o f knowledge and theory is taken up differently by different philosophers within the pragmatist tradition. In this discussion, I am drawing mainly on the so-called neo-pragmatists, specifically Bernstein and Rorty. The work o f these philosophers built on classical pragmatism (including the works o f Dewey, Peirce, and James), and in the case o f Bernstein, analytic hermeneutics (particularly the work o f Gadamer). Neopragmatism brings to traditional pragmatism considerations o f power, inequality, and oppression (Musolf, 2001), topics Rorty and Bernstein believed were gaps is earlier pragmatist works. These pragmatic philosophical approaches influenced the development and conduct o f this project within four domains. In the sections that follow, I illustrate how pragmatism (a) draws attention to the moral dimensions o f children's participation, (b) supports sustained attention to human activities related to decision-making, (c) demands an accounting o f the ways i n which knowledge  -35 -  is viewed as contingent and contextual, and (d) calls for sustained attention to the complexity o f the phenomena o f study.  14  Attending to the Moral Dimensions of Children's Participation Vokey (2001) writes about our "moral point o f view," those "sets o f beliefs, attitudes, interests, norms, and priorities that condition (but do not determine) practical and moral judgement" (p. 3). A t the heart o f this project are the moral points o f view that shape particular judgements within interactions with children, and in the development and manifestation o f the many policies and structures that constitute children's contexts. Who are chronically ill children in the contexts o f decision-making? What are the priorities that shape our judgements about their health care?  Moral concerns are practical concerns and practical concerns are moral i n nature. This is a fundamental position o f pragmatism—that moral problems are important, as they manifest in the everyday lives o f human beings. Hence, as Rorty (1999) writes, the purpose o f inquiry is to "achieve agreement among human beings about what to do, to bring about consensus on the ends to be achieved and the means to be used to achieve those ends" (p. xxv). Understanding more about what we hold as a shared moral point o f view and how that point o f view is translated into the structures and practices that shape children's lives is where the practical meets the ethical. Learning about predominant moral points o f view is facilitated by looking at the problem o f  While pragmatism provides this project with useful structures for thinking, it provides less guidance about the goals of inquiry. Rorty (1999) suggests that what is important in human inquiry is "devising ways of diminishing human suffering and increasing human equality, increasing the ability of all human children to start life with an equal chance of happiness" (p. xxix). What constitutes suffering and what counts as equality remain undefined, and are themselves left open to redefinition and reinterpretation. This has been identified as one of the main limits of pragmatism—that temporary and contingent understandings of social goods' create a political space wherein the consensus of the majority renders the suffering of a few invisible, that when asking "what works?" we neglect the question of "for whom?" (Mouffe, 1996). 4  -36-  children's participation from several philosophical angles; the traditions o f critical social theory, post-structuralism, and pragmatism contribute to inquiry i n this area.  Sustaining Attention to Practices of Participation  15  A t first, the pragmatic requirement to sustain attention to the very human problem underpinning the project and the human practices related to that problem seemed straightforward. Given that decisions in children's health care constitute the human practices around which the project revolved, it was evident that children's and adults' perceptions and activities relating to these decisions would be the focus o f this inquiry. Decisions would be sites o f human practice, where experience and action related to participation would become evident.  A s the project proceeded, however, data from children and their parents challenged my conceptions o f the foundational concepts o f decisions, decision-making, and participation. Pragmatism's challenge led me to question how thinking about these concepts in particular ways was shaping the research process. Because what is important about any concept or theory lies in what it leads us to assume, to expect, to attend to, and to do (Doane & Varcoe, 2005), it became necessary to examine and critique these concepts i n light o f what I was hearing and observing. In this way, as I w i l l present in chapter four, my perspective on the problem itself shifted; my notions o f what the concepts o f decisions and participation represented became more nuanced and complex. "What works," then, as a criterium for knowledge and truth, serves also as an analytic device in this research project.  15  The notion of practice is at the heart of pragmatic traditions. The term pragmatism is derived from the Greek word pragma, which means "that which has been done, an act, a deed, a factaction" (Pearsall, 1998). Schatzki (2001) sees practice as "embodied, materially mediated arrays of human activity centrally organized around shared practical understanding" (p. 2). In this study, activities related to decisions (including children's participatory activities) are embodied and materially mediated. The work of the research was to learn about the embodied activities, and the patterns of material mediation, and to ask the question, "What shared practical understanding exists about children's participation in health care decision-making?" -37-  This focus on the practices of decision-making and the activities within them had consequences for the collection, description, and analysis of the data that I describe in detail in chapter three. Importantly, this focus demanded efforts to get as close to phenomena of decisionmaking as possible and to learn about practices and actions through a variety of sources and methods; it required that, while placing great value on what the participants thought about decisions and decision-making, I also asked questions about what people actually did, and who they were in the world (Doane & Varcoe, 2005; Musolf, 2001). Accepting the Contingent Nature of Knowledge We realize that although we must begin any inquiry with prejudgements and can never call everything into question at once, nevertheless, there is no belief or thesis—no matter how fundamental—that is not open to further interpretation and  criticism. (Bernstein, 1983, p.327, emphasis added) At the heart of pragmatic traditions is the rejection of the notion that human knowledge rests on fixed foundations and an acceptance that human knowledge is both contingent and contextual, that all our beliefs are open to interpretation and criticism. Bernstein (1992) portrays pragmatism as a process of "engaged fallibilistic pluralism" (p. 336). This orientation toward knowledge and interpretation is, I believe, one of the great strengths of a pragmatic approach to inquiry. Any quest for overarching truths is relinquished, and inquiry becomes a project of generating wisdom and understanding about human practices and activities, an orientation to learning that emphasizes the contingent nature of our knowledge and invites challenges to existing interpretations.  Claims about the contingent nature of knowledge give rise to basic questions of epistemology and ontology. If knowledge is contingent, then there are no foundations, and, if there are no foundations, can we know anything at all? Bernstein (1983) contends that questions of realism versus idealism and foundationalism versus anti-foundationalism represent a sort of -38-  misplaced anxiety brought to us by the Enlightenment (particularly through works o f philosophers such as Descartes and Kant). He holds that the important concerns regarding human knowing and being are not those o f epistemology or ontology; rather, he suggest that when we cannot "relate some pre-given determinate universal to a particular situation" (Bernstein, 1982, p. 830), the only kind o f knowledge we can develop is a sort of practical wisdom. The key to developing useful knowledge is through deliberation and judgement regarding the moral and practical dimensions o f shared human activities.  A t this point, I likely do not need to explain that this project was not a quest for stable truths about chronically i l l children's participation in health care decision-making; rather, I was looking to create useful knowledge that might inform health care practice with children and their families. Relinquishing the quest for certainty meant repeatedly holding up to scrutiny preformulated beliefs and subsequent interpretations about children and children's participation. V i e w i n g knowledge about children's participation i n decision-making as contingent had important implications throughout the project. In chapter three, this influence is made evident in the descriptions o f data collection and analysis. Likewise, my expectations o f the final product o f this project were shaped by this understanding o f knowledge as contingent. Rather than a lasting sort o f explanatory truth, my findings represent a historically located explanation o f the phenomena o f children's participation, an interpretation that reflects the human phenomena as they became manifest i n a particular research project. The end product o f this project can be understood, then, as a historically located, partial and temporary interpretation o f the phenomena of children's contribution to decisions. It may have, however, practical significance.  Embracing Complexity Complexity abounds in any field o f study related to human existence, and this study is no exception. A pragmatic viewpoint lends itself to resisting the temptation to ignore variation or to -39-  simplify complex phenomena. Here I w i l l show how pragmatism's concern with dualistic thinking plays out in this project. From a different perspective, I w i l l show that deconstructive approaches have something to bring to pragmatic thinking when it comes to embracing the complexity o f children's participation in health care decision-making.  Pragmatic thinkers suggest that human tendencies toward dualistic thinking often result in simplistic understandings o f complex human problems, practices, and activities. This study 16  harboured several important phenomena that might tend to binary thinking (e.g., participation versus isolation, voice versus silence, decision versus indecision, and child versus family). Looking back, I can see that, to some extent, these phenomena existed as binaries i n the initial conception o f this work. Attending to the complexity o f these phenomena resulted i n moving further from dualistic thinking, toward interpretations that capture some o f the diversity and commonality o f the human experiences these concepts represent.  In part, the consequence o f rejecting binary thinking in the analysis o f the data resulted in a product that James would have described as "a turbid, muddled, gothic sort o f affair without a sweeping outline and with little pictoral nobility" (cited in Bernstein, 1992, p. 329). Without a doubt, attending to the complexity within the data set o f this project created what was, for me, a daunting challenge. I was confronted with the question o f what useful claims could be made  16  The fundamental dualisms against which pragmatists (and others) rebel (subject versus object, mind versus body) are closely associated with the division between rationalism and empiricism. The pragmatist tendency to balance dualisms can be seen as structuring a whole complex and interrelated field of similar dichotomies. Strauss (1993) sums this up: In the writings of the Pragmatists we can see a constant battle against the separating, dichotomizing, or opposition of what Pragmatists argued should be joined together: knowledge and practice, environment and actor, biology and culture, means and ends, body and mind, matter and mind, object and subject, logic and inquiry, lay thought and scientific thought, necessity and chance, cognitive and noncognitive, art and science, values and action, (p. 45) - 40 -  when so much diversity exists in the experience o f children and their families. This is one o f the creative challenges o f inquiry in a pragmatic tradition.  Here I want to say a little about the contribution o f post-structural perspectives to my thinking throughout this project. Post-structuralism and the deconstructive activities it supports, 17  by their very nature, magnify the complexity o f human practices and activities. Like pragmatism, post-structural perspectives reject the project o f creating grand narratives o f human existence. Post-structuralism's project is to draw attention to the pervasive nature o f power and discourse and to demonstrate how these operate to shape human relations and human existence (Mouffe, 1996) . From a deconstructivist position, the influence o f power is everywhere—from the highest level o f political organization to the routines o f daily life. Discourse can be understood as one 18  medium through which power relations are maintained and reproduced. It is within these relations o f power that human experiences are constituted and defined ( M c C o r m i c k & Roussy, 1997) . From this stance, children's participation in health care decision-making is perceived as mainly a political activity, focusing attention on how children, parents, and others might be subjugated in the context o f decision-making. In this research endeavour, deconstructionist approaches draw attention to the structural manifestations o f power within the life experiences o f individual children and in that way assist in making sense o f the practical realities o f children's  17  Pragmatism and post-structuralism can be understood as incommensurable perspectives on the creation of knowledge about human phenomena. While both deconstruction and the pragmatic perspectives of Bernstein, Rorty, and others reject any link between knowledge and universalism, some would suggest that although deconstruction has efficacy in the analysis of power, it has little to contribute to the practical concerns of human existence (Mouffe, 1996). One prominent critique of post-structuralism is that, while providing the tools to understand how power and discourse operate in society, it fails to offer any means by which to practically attend to oppression and inequality (Misgeld, 1992). Another critique has to do with how power is conceptualized within post-structural views, as a social force capable of subjugating human beings. This view of power excludes notions of human agency (Layder, 1997).  18  In outlining his perspective on power, Foucault writes that power is everywhere, comes from everywhere, and cannot be "possessed, held, acquired, seized or shared, but only exercised" (Foucault, 1990, p. 92). -41 -  lives. Critical perspectives supported attention to the various and complex ways power dominated and shaped the experiences o f the children as they lived their lives, the realities o f families as they participated in the decision-making processes with or for their children, and the practices o f health care professionals as they worked with children and families (Crotty, 1998; Kincheloe & McLaren, 2000). Specifically, critical perspectives call into question many o f the patterns and practices that shape human existence; they form a critique o f those values, norms, and beliefs that have been thematized i n human interaction and i n health care policy and practice.  In addition to a critique o f structures and ideologies, critical social theoretical perspectives call for an analysis o f competing power interests and a description o f how these power interests play out in the lives o f children with chronic illness (Kincheloe & McLaren, 2000). This supports specific attention to manifestations o f power within human interactions and communications which, in the case o f health care decision-making for children, leads to questions such as who has a say in decision-making and why, who speaks to (and for) whom, and how children's expressions o f wishes and desires are taken into account.  Summary Recognising the need for an increase in knowledge that informs professionals in their practice with children and families, several researchers have begun projects investigating a variety o f topics related to children's participation in decision-making. Once again, research from several disciplines informs our thinking about this issue. Specifically, an important backdrop for this proposed project is provided by research investigating three related topics: the nature o f children's contribution to decisions, children's competence, and contextual influences on decision-making.  -42 -  A l s o relevant to this project is research that assists us in understanding children's expressions o f intentions and desires: the ways i n which they express themselves in decisionmaking contexts. Facing these challenges is particularly important for chronically i l l children, given the pervasiveness o f health care decision-making in their lives. Little research has directly addressed how children perceive their involvement in the decisions that are made. The proposed project begins to address this gap, seeking to elicit children's opinions o f the decisions that are made in their lives, and the extent to which their own views influence those decisions.  In this chapter, I have mapped the complex terrain o f existing knowledge i n the field o f children's participation in chronic illness decision-making. This field is characterized by expanding knowledge regarding the experience o f children's chronic illness and uncertainty about the nature and qualities o f children's participation in health care decisions. Within the domain o f ethics and ethical inquiry, the topic o f children's capacities and competence, and how we enact our understandings o f these, remains unsettled. These complexities characterize the launching point for this project. Pragmatism, combined with elements o f post-structuralism and critical social theory, provides guidance for knowledge development when the problems we seek, to address are complex and yet have important, real-world consequences. I have delineated the key avenues through which these philosophical approaches guided my thinking as I decided on methods and as I conducted the study. Building on the theoretical and philosophical location o f the study I have articulated here, in chapter three I detail both the decisions that guided my approach to knowledge development i n this process, and the specifics o f the research design that shaped sampling, data collection, and data analysis.  -43 -  CHAPTER THREE METHODOLOGY  Introduction In chapter two, I outlined the theoretical location o f this project, situating the research problem and questions within the broader theoretical and empirical terrain. M y project in this chapter is to depict my approach to researching chronically i l l children's participation in health care decision-making, making explicit how the research project was planned and how it actually unfolded. I begin this chapter with a brief history o f the project, and then proceed to detail the methodology that guided the inquiry. In the sections that follow, I describe the specifics o f design and method, and suggest that (at least in part), the data generated in this project was created in the space where various philosophical and methodological commitments intersect with the practical everyday realities o f the children and parents who participated in this study.  History of the Project The original proposal for this project was defended in December o f 2002. The project was approved by the university ethics committee in March o f 2003 (see Appendix A ) , and data collection and analysis commenced in M a y o f 2003. A t that time, the project was designed as a relatively small, qualitative project, wherein my intent was to collect data with seven or eight chronically i l l children and their parents, following each family group for the period o f approximately one year. Believing that a larger sample size and expanded project would provide more substantial insight into the nuances and complexities o f chronically i l l children's participation in decision-making, applications for operating grants were made to two health research funding organizations. Both applications were eventually successful, and in October o f 2003, the project was granted operating funds from the Canadian Institutes o f Health Research  -44-  (CIHR).  19  A t that time, this project was expanded: the sample size was significantly increased,  and plans for dissemination o f findings became more ambitious.  The data collection and analysis that began in M a y o f 2003 continued until June o f 2005. A t that point, the research process was interrupted for a period o f ten months. Beginning i n 20  A p r i l o f 2006,1 undertook the final analysis and the writing o f this dissertation. The timeline for the project is depicted below.  Proposal defense •  ]  !  U B C ethics appfovat  !  ... • • Site res^'^jch'approyais.'J  i  ifippili 2003  2004  n-ihn~J"~~--"HaMa* ' ' 11 11  i" I'IL  2005 •'  "  *—"il  '  2006  2007  •MillirtiiMi imril ritur -^-*- "|^tfcim^iwli7iniitfiiiirlTnliiiniiirliii1ftinit jiu  EES  Preparation/entry  as (MB  Analysis and write-up  Figure 1. Timeline depicting the history o f the research project.  Because this project unfolded over an extended period o f time, certain questions arose. The primary question has to do with the extent to which data collected over a period o f time, and analysed later, is an accurate representation o f the current experience o f children, parents, and health care providers. This is an important concern, one worthy o f attention when the implications o f the findings are scrutinized. I do believe, however, that certain aspects o f this  P r o j e c t title: C h i l d r e n ' s P a r t i c i p a t i o n i n C h r o n i c I l l n e s s D e c i s i o n - M a k i n g . P r i n c i p a l i n v e s t i g a t o r : D r . S a l l y T h o m e . C o - I n v e s t i g a t o r : G l a d y s M c P h e r s o n . A c o n d e n s e d v e r s i o n o f the C I H R r e s e a r c h p r o p o s a l is i n c l u d e d i n A p p e n d i x B . A n i n t e r r u p t i o n i n t h e research p r o c e s s o f s e v e r a l m o n t h s w a s neither a n t i c i p a t e d n o r w e l c o m e d . I d e a l l y , o f c o u r s e , data c o l l e c t i o n , a n a l y s i s , a n d d i s s e m i n a t i o n w o u l d h a v e f l o w n s e a m l e s s l y o n e into the other. S o m e t i m e s life c a n get i n the w a y , a n d i n this project, f o r health reasons, t h e f i n a l a n a l y s i s a n d w r i t e u p h a d to b e d e l a y e d b y s e v e r a l m o n t h s .  -45 -  phenomenon, i.e. children's participation in health care decision-making, are not particularly time sensitive. That said, evidence exists i n the data suggesting that changes to the health care system do shape some o f children's and families' experiences. A n d in a world where health care structure and practice is rapidly changing, this is an important consideration—one that I w i l l address again in the final chapters o f this dissertation.  Interpretive Description as Methodology Depending on one's beliefs about the nature o f the problem and the orientation to knowledge development assumed, the project o f investigating chronically ill children's participation in decision-making could reasonably be addressed from a variety o f methodological positions. A s I detailed in chapter two, I was most interested in the complexities o f children's participation, including the many individual, relational, and contextual influences that shaped children's contributions to decisions. I was less interested in the generation o f generalizable knowledge that would cross health conditions, age, and other variables than I was i n learning about certain nuances, paradoxes, and contradictions that make this phenomenon a particularly challenging one for nurses and other health care professionals. Because qualitative approaches to knowledge development tend, in different ways and from different standpoints, to render visible some o f these complexities o f human experience, I decided in this project to take a qualitative approach to knowledge development. Interpretive description might be understood to be a second-generation approach to qualitative health research. Over the past decades, as qualitative work has gained credibility, and as knowledge generated though these approaches has flourished, researchers in a variety o f fields have grappled with some o f the limitations inherent in the traditional methodologies, methodologies originally developed to meet the knowledge agendas o f particular disciplines.' Correspondingly, throughout the past decade, various health researchers have begun tailoring  -46-  qualitative approaches to research in ways that attend more specifically to the health and illness experience o f human beings, and that focus on the kinds o f clinical knowledge practitioners seek (Sandelowski, 1995a, 2000). Interpretive description is one such approach (Thorne et al., 1997). ' 2  First described in 1997 by Thorne and colleagues, interpretive description is grounded i n a notion that human health and illness experiences are comprised o f complex interactions between individuals as biological, social, and emotional beings, and that these interactions unfold within complex and shifting physical, social, and political worlds. Nurses and other health care professionals are interested i n generating knowledge about these experiences and interactions for one primary purpose: to improve clinical practice. A s a methodology, interpretive description has strong links to grounded theory, naturalistic inquiry, and ethnography, drawing on methods refined within those traditions. Interpretive description, however, departs from these approaches in its clear and sustained emphasis on the practice origins o f the research problem and questions and its persistent attention to the practical implications o f the research findings. It pushes researchers toward a comprehension o f problems from clinical or practice perspectives, and toward research designs that w i l l lead to the development o f some theoretically defensible conceptualization o f the characteristics, patterns, and variations that might constitute and shape particular clinical phenomena. The hallmark o f a good interpretive description, then, is the generation or extension of knowledge about the clinical phenomena in a way that guides practitioners, or, more specifically, provides "a mental heuristic ... that would be consistent with the reasoning o f  21  I think it is worth mentioning the work of Kincheloe (2001; 2005), and his view of research as constructed activity, and methodology as an effort to draw on all the epistemological tools that we have available to us to create complex understanding s of human phenomena. "We actively construct or research methods from the tools at hand rather than from passively receiving the 'correct,' universally applicable methodologies" (p. 324). In his work, Kincheloe is calling for knowledge generation across disciplinary boundaries, and the development of tools that will assist us to look at human phenomena from a number of different perspectives. -47-  expert practitioners for whom a similar understanding had been acquired through extensive pattern recognition and reflective practice observations" (Thorne et al., 2004, p. 8). Certain principles o f interpretive description manifest in the design decisions o f this study. I have summarized several o f these principles in Table 1. The first o f the principles listed has to do with the generation o f an analytic framework; a synthesis o f the state o f existing knowledge related to the research topic that "orients the inquiry, provides a rationale for its anticipated boundaries, and makes explicit the theoretical assumptions, biases and preconceptions" (Thorne et al., 1997, p. 173). The analytic framework for this project is made 22  explicit in the philosophical, theoretical, and empirical locations o f the project that I detailed in chapter two.  Layder uses the term "theoretical scaffold" (1997, p. 146) to describe a similar sort of framework. Layder, however, understands this framework as providing structure for both data collection and data analysis, holding that analysis is the active questioning the theoretical positions inherent in the framework. The "analytic framework" of this project is somewhat less directive, intended more as a vehicle that makes explicit the values and beliefs underpinning the design and conduct of the project. -48-  Table 1 Principles Guiding Design Decisions in Interpretive  Description  Design Component  G u i d i n g Principles  Analytic framework  1. Locate the inquiry within the field o f knowledge development 2. Make explicit the theoretical assumptions, biases and preconceptions that underpin design decisions  Sample selection  1. Sample theoretically and purposefully 2. Seek maximal variation on emerging themes 3. Foster a strong database to enhance credibility o f claims  Data sources  1. Determine who experiences the phenomena o f interest and who among them may be best able to convey that experience and variations in that experience 2. Scrutinize the relationship between data sources and the findings that derive from them 3. Actively seek a range o f data sources  Data analysis  1. Analyze inductively rather than deductively 2. Sustain a comprehensive perspective o f the data, avoid fracturing the data into small, decontextualized segments 3. Emphasize synthesis, theorizing, and recontextualization  Note. These principles are drawn from Thorne and colleagues (1997) and Thorne and colleagues (2004).  The analytic framework influenced the design o f this study in multiple ways, many o f which w i l l become apparent in the description o f the project that follows. For instance, given that previous research has shown that children are often excluded from decisions, it was vital to look for decisions children might be unaware of, and to attend to how and when children were invited into decisional processes. Likewise, to be consistent with a pragmatic approach to knowledge development, it was essential that the process o f inquiry support multiple perspectives on the phenomena o f children's participation in decision-making; fostering sustained attention to the experiences o f children, their parents, and health care providers; supporting reflection on the data  -49-  and emerging interpretations from a variety of philosophical perspectives; and ensuring critical questioning of pre-existing beliefs and emerging interpretations. The analytic framework I provided in chapter two, and the methodological commitments inherent in interpretive description, led to particular goals that influenced the design of this project. These goals can be summarized in the following statements: •  To learn from school-age children who vary according to the health conditions that they experience, and who vary in age and sex  23  •  To seek multiple perspectives on children's participation, especially those of parents and health care professionals  •  To interrogate contextual influences on children's participation, particularly as manifest in the organization of health care, in media depictions of chronically ill children, and in policy documents  •  To begin data analysis early by considering the bigger picture of the data, and on the basis of early impressions, to tailor ongoing theoretical sampling.  The data that eventually comprised the data set included demographic information about the participants; audiofilesfrom interviews; transcriptions from interviews with children, parents, and health care providers; writtenfieldnotes;photographs taken during encounters with children; drawings by children; newspaper clippings; and policy documents. In the following sections, I detail how and where these data were collected.  Deciding on what ages of children to include in this study was the subject of much deliberation. On one hand, we know that there tends to be a developmental component to what children understand about their illnesses and the decisions related to their care. On the other hand, as I mentioned in chapter two, there is substantial evidence that children's capacities to participate in decisions may be as much influenced by life experience as by developmental stage. In the end, the age range of the children recruited into this study is fairly wide: that group of children commonly identified as school age (ages seven to twelve). -50-  Data Collection with Children and Parents Data collection with children and their parents was at the heart o f this project. Data was collected regarding thirty-one children with a variety o f health conditions; for each o f these children, data was also collected regarding at least one o f their parents. The children I sought to include in this study met the following criteria:  •  The child would be between the ages and seven and twelve years o f age at the time recruitment.  •  The child and his or her parents were able to converse in English.  •  The child and his or her parents would be available for data collection in the Lower Mainland o f British Columbia.  •  The child was at least three-months post-diagnosis o f his or her primary chronic health conditions.  •  The child lived with at least one o f his or her natural or adoptive parents.  •  The child expressed willingness to participate in the study.  •  The child's parents consented to the child's and their own participation.  24  In this project, I did not set out to collect data with siblings, step-parents, grandparents, or children's friends although in certain instances, these people were present during periods o f data collection. While data collection with these important people may have resulted i n useful insights, I decided not to include them as primary participants, in order to sustain attention on the children themselves, and on the primary relationships in their lives - their relationships with their parents.  2 4  Children who do not live with their natural or adoptive parents are another important group worthy o f study. A disproportionately large number o f children living in care have chronic health conditions, and decision-making related to their health care may be, at least along certain dimensions, more complex than decision-making among the population included in this study. This may be an interesting area for future inquiry.  -51 -  The process o f data collection with children who met the above criteria and their parents required a great deal o f thought, reflection, and conversation. Issues related to negotiating entry to the study sites, access to children and their parents, and the practicalities and ethics o f recruitment and sampling were vital to ensuring the integrity o f the project.  Negotiating E n t r y and Access A s many authors have described, the process o f negotiation and renegotiation that characterizes access and recruitment o f participants in qualitative projects can be an arduous task (Glaser & Strauss, 1967; Lincoln & Guba, 1985). For many reasons, accessing chronically ill children and negotiating entry to their lives was challenging and complicated. The complexity o f the lives o f these children and families, the tendency o f some health care professionals to protect chronically ill children from excessive demands on their time and energy, the many layers o f formal or informal approval required in certain settings, and my own concerns about intrusion and coercion o f children and families were some o f the influences that limited access to certain potential participants in this study.  In order to create a strong and diverse data set, I set out to gain access to children o f varying ages, with varying health conditions. To do this, I embarked on a process o f connecting with nurses and physicians in several different clinical practice areas served by two health centres i n the Lower Mainland o f British Columbia. Although formal research approval was readily obtained at each o f these sites, access to the children and parents themselves was not always so simple. A s has been the experience o f other researchers, certain practice areas were welcoming o f this research project while others were less so. In certain practice areas, informal rules held that access to children and families must be approved by the physicians responsible for the children's care. In many areas, nurses and physicians who would, under other circumstances, assist with recruitment, were hesitant to do so because o f workload or workplace stress. When -52-  approached with the request to assist with recruitment o f children, several nurses expressed unwillingness to add one yet one more responsibility into a work situation i n which they already felt overwhelmed. In the end, entry to certain areas, and hence access to certain groups o f children, was not possible. In contrast, in other settings the research was welcomed; nurses and physicians facilitated recruitment supported data collection in their practice sites.  The first site for recruitment and data collection was a tertiary care pediatric hospital where children received health care for a variety o f chronic health conditions (hereafter referred to as Site A ) . Because health care i n that organization was largely organized according to medical specialty, access to children with different conditions meant negotiating with many different health care providers. A s such, much o f my time i n the early stages o f this project was devoted to meeting with nurses and physicians, explaining the project, and requesting access to the children and families in their domains. Importantly, in Site A , I gained access to two hospital units that provide care to a substantial number o f children with a variety o f health conditions, and it was from these units that a large number o f children were recruited.  The second setting was a large urban hospital that had a substantial pediatric health care program and a pediatric inpatient unit (hereafter referred to as Site B). This centre served as more o f a community health centre, although some specialized services were offered. A smaller number o f children were recruited from this centre.  Recruitment of C h i l d r e n and Families In both settings, nurses and physicians were enlisted to assist with recruitment o f children and parents who met the inclusion criteria for this study. The initial recruitment plan held that a health practitioner would introduce the study to the child and family, provide them with written information (see recruitment pamphlet, Appendix C ) , and invite them to contact me i f they were  -53-  interested in participation i n the study. This approach was largely unsuccessful. In their busy work lives, health care practitioners rarely remembered to mention to study to potential participants; when they did, even when parents and children expressed interest, parents rarely contacted me. In the end, changes were made to recruitment processes.  25  Enlisted nurses and  physicians remained the initial contact with children and parents; however, either a research assistant or I sustained presence in the clinical areas, being available to talk to parents and children when they expressed interest in being part o f the study. Depending on the nature o f that encounter, arrangements were made for data collection, with opportunity provided for parents and children to rescind their agreement to participate. This approach was resulted i n the recruitment o f the majority o f the child and parent participants i n this study.  Certain children and parents were recruited into this study through other means. Five o f the families approached me having heard o f the study from my colleagues or other participating children and families. One family approached me having learned o f the study through posters i n the clinical area. A significant number o f the children in this study were recruited from two hospital units where children received treatments that required several hours per day, often for several consecutive days or several times a week, but were not inpatients.  Recruitment o f children and parents into this study took far longer and was much more difficult that I had anticipated. Looking back, I would say that recruitment was difficult for two main reasons. The first was that I endeavoured to access children through a number o f sites and programs and hence though layers o f formal or informal gatekeepers. In doing so, I encountered an impressive array o f orientations toward this kind o f research with chronically i l l children. The second factor that made recruitment difficult was the undeniable fact that school-age children living with chronic health conditions are very busy people, as are their parents. For most, there is  2 5  University ethics approval and institute approval were obtained for this change in recruitment plans.  -54-  no ready-made space in their lives into which a researcher can easily enter. Time and energy to participate in this research project were by necessity drawn from other activities and occupations in their lives. That said, as I w i l l describe below, many children and parents gave willingly and enthusiastically o f their time and energy to speak o f their experiences with chronic illness and o f the decisions in their lives.  Sample The final sample in this project consisted o f 31 school-age children and 37 o f their parents. The sample included three pediatric nurses, interviewed early in the study as part o f the initial process o f entering the field and clarifying the current professional context within which children's decision-making might be understood. While sample size remains a contested question in the field o f qualitative health research, I believe Sandelowski's suggestion that sample size should be small enough to "permit a deep analysis and large enough to give a new and richly textured understanding o f the experience" (1995b, p. 182) provides important direction. In my efforts to generate a rich data base, initial decisions about the projected sample size relied, in part on the experiences o f other researchers who have conducted related or similar research. In a grounded theoretical project with school-age children i n care, Thomas (2000) found a sample size o f 47 was sufficient to create an interpretation o f these children's participation in decisions such as where they would live. In an ethnographic study o f the children's coping with chronic illness, Clark (2003) collected data with 46 school-age children, inquiring about their experiences living with asthma or diabetes. Other qualitative projects with children have, with sample sizes less than 12, also provided rich descriptions o f the experiences of particular groups o f chronically ill children (Woodgate, 1998a, 1998b).  In interpretive description, purposeful and theoretical sampling are foundational principles. This means that the selection o f individuals and instances for data collection are - 55 -  initially guided by existing understandings o f commonalities and variations in the phenomena o f interest, and subsequently shaped by evolving interpretations o f the data., Principles o f purposeful and theoretical sampling are intended to guide researchers toward identifying shared realities among the people who experience the phenomena o f interests, in this case children and families, while at the same time seeking variation on the themes and concepts that become prominent as the analysis proceeds (Sandelowski, 2000; Thorne, 1997). The goal i n this project, then, was to obtain a sample that had sufficient heterogeneity to produce an in-depth and comprehensive representation o f variations i n children's participation in health care decisionmaking, while at the same time gathering sufficient substance to formulate some account o f the patterns o f participation that were shared across cases. I began sampling by seeking variation along certain demographic parameters (see Appendix D). For children, this included type o f health conditions, time since diagnosis, age, family composition, and sex. .In addition to these usual sorts o f demographic variables, I collected information about children's medications and diets, the nature o f their treatment regimes, and their use o f health various health services. Additional demographic information collected about the children's parents included sex, age, ethnicity, education, employment status and socio-economic status. A t the same time, I sampled according to what I understood as certain phenomenal variations (Sandelowski, 1995b), i.e. children who lived with day-to-day types o f decisions, children for whom health care decisions tended to be more formal and discrete, and children for whom decisions have varying degrees o f influence on their lives. A s analysis proceeded, theoretical sampling became more a matter o f "sampling" for variation on emerging themes, and less about seeking demographic and phenomenal differences that might distinguish children in certain ways. For example, as the project proceeded, I was less focused on finding new and different 'kinds' o f children and decisions, and became more interested i n certain details about children's expressions, the important matters o f their lives, and their -56-  relationships. Sampling then became more about an inquiry into children's and parents' experiences along these lines, and less about accessing more and different children.  The age range o f the children at the time o f recruitment was seven years to 12 years with a mean age 10.0 years. More than twice as many boys as girls participated in the project (see Table 2). This difference is not readily explained by incidence o f the various health conditions, or by any obvious selection bias. A n d , while I endeavoured to include more girls in the study, in the process o f recruitment, this effort was only partially successful, and the sample is consequently significantly uneven along this parameter.  Table 2 Sample Composition by Age and Sex Girls  Boys  Total  7 years  1  2  3  8 years  2  3  5  9 years  -  5  5  10 years  2  -  2  11 years  3  6  9  12 years  1  6  7  9 9.8  22 10.1  31 10.0  Age at recruitment  n M  O f the parents, eight were men, 29 were women. The most obvious explanation for this difference was that children and parents were recruited i n health care settings, places where an adult accompanied the child as the child received health care. In most instances this adult was the child's mother. Five o f the fathers contributed to this research during research encounters in their homes. Data was collected with three o f the fathers during clinic their child's clinic visits. There are no instances in this sample where data was collect from the child's father but not the child's  -57-  mother. There are instances where a father was present or available to engage in the research process, but did not choose to do so. Of the 29 families, 19 were two parent families, and 10 were families with one parent (in every case a woman). Several of the two parent families were blended families. In regard to siblings, the children in this study had from 0 to 5 brothers or sisters (if step-siblings are included). With the exception of one adopted boy, all children lived with at least one of their biological parents. All of the children in this study spoke fluent English. English was a second language for several of the parents: within the sample were men and women who first languages were Mandarin, Portuguese, Spanish, Punjabi, and Polish. The families varied according to their identified ethnicity. The majority (20) of the parents identified their families as Caucasian, two as First Nations, three as South Asian, and three as from other backgrounds. Five of the families were first generation immigrants from other countries, specifically Guatemala., Portugal, Poland, India, and Taiwan.  Of the 29 families (two of the families had two children with chronic health conditions that were included in the study, reducing the number of families from 31 to 29), 21 families lived in the Lower Mainland region of British Columbia, four were from various regions of Vancouver Island, three were from the interior of British Columbia, and one family was from the North. Research encounters with children and parents whose homes were outside the Lower Mainland of British Columbia took place in the Greater Vancouver region where the children received treatment for their chronic health conditions. Income levels, although not always reported, varied widely. These descriptors of family structure however, do not fully capture the diversity apparent  -58-  within the sample children and families - they varied according to interactional styles, interests, religious and spiritual commitments, and along other such parameters that I did not measure.  Table 3 lists the range o f primary diagnoses ascribed to these children. Although helpful, this list does not capture the range o f influences these conditions had on the children's lives. For some children, i.e. children with severe allergies or seizure disorders, managing their health conditions was largely a matter o f vigilance, o f avoiding dangerous situations and being prepared to respond to crisis events. For other children, it appeared that their illnesses defined, to a large extent, the structure and substance o f their daily lives. Children with renal failure spent up to 15 hours per week undergoing hemodialysis. Children with diabetes endeavoured to adhere to a rather strict regimen o f blood testing, insulin administration, dietary restrictions, and exercise requirements.  -59-  Table 3 Primary Medical Diagnoses of Child Participants  Primary Medical Diagnosis  Participants (n=31)  Asthma  2  Congenital heart disease  2  Diabetes  4  Seizure disorders  4  Osteogenesis imperfecta  4  Progressive neuromuscular conditions  1  Rare metabolic and genetic disorders  5  Renal disease  5  Rheumatoid conditions  2  Severe allergies  2  Note. M a n y o f the c h i l d r e n i n t h i s s t u d y h a d m o r e t h a n o n e d i a g n o s i s . T h e d i a g n o s e s listed here represent those that w e r e c o n s i d e r e d to be the c h i l d r e n ' s p r i m a r y d i a g n o s i s .  School was another important feature in the lives of the children in this study. All the children in the study attended school and, among these, twelve of the children had support from educational assistants within regular classrooms. According to parents' accounts, at school several of the children in this study lagged behind their peers in academic achievement. Various reasons were sited for this: slight cognitive delay, missed school, the side effects of medication, and effects of seizures or other physiologic events. Another element of theoretical sampling shaped the data set and influenced analysis in this project. This had to do with those children and instances that are known to exist within this -60-  population but to whom or which I couldn't or didn't have access. For example, it is plausible that certain children with chronic health conditions might, for reasons o f shame or embarrassment, make apparently unwise decisions, or that certain families might grant nearly full autonomy to their children in matters o f decision-making. These "theoretical outliers" (McPherson & Thorne, 2006) represent children and families whose experience might differ from the experiences o f children in the sample population—those instances that practitioners in the field could describe as challenges to emerging analyses. Reference to these theoretical outliers appears in the findings presented in chapters four and five.  Research Encounters with Children and Parents In five, four, three, two, one. Fantasy Star is a place. Earth 1 has exploded. And now there's Earth 2 Ragor. We have been searching for a Red Wing Rico. He has been caught by a diabolical alien and then we try to get Ogoflow but our men didn't make it. And then Ogoflow was healed from me, the one and only me. [Makes chugging noise] And then we have been searching for DNA tests from Ragor's animals like Rag Rapis, Boomers, Gigaboomers and humongous boomers. A place 2000 and X, the future is here and then this will be the end. (Lucas, eleven-years-old)  Lucas borrowed my recorder to tape this audio. It is an imitation o f something he knew 26  a great deal about—a particular video game. A s I came to appreciate that video games provided important entertainment for h i m during the hours he spent undergoing dialysis, and as I began to understand that video games were one o f the few activities that he could engage in with his friends, I came to understand this apparent gibberish in the transcript data as an key symbol o f what really mattered to Lucas. I start my description o f research encounters with children and parents with this excerpt in order to illustrate an important point that shaped this project: that while children's agendas were often unsynchronized with mine, their forthright honesty and integrity would yield clues to what mattered to them about decisions i n their health care. A s I hope w i l l become clear, understanding and appreciating the significance o f this difference  26  A l l children and some of the parents in this study were assigned pseudonyms. None of the names used in the recording of findings are the child's real name. -61-  became a central focal point for theoretical sampling and for the ongoing process of analysis. To get to that point, however, I need to explain the many details of my interactions with children and their families.  27  From interviews and observation to research encounters My original proposal for this project suggested that data collection with the children and parents would take the form of semi-structured interviews in conjunction with periods of participant observation. My intent was to engage in one or two semi-structured interviews with each of the children and their parents, and, for a select subset of the sample, to conduct multiple 28  semi-structured interviews and engage in repeated periods of participant observation over an extended period of time. While some of the data collection instances with children resembled what are generally understood as semi-structured interviews or periods of participant observation, more often, what constituted the encounters with children was some combination of the two, and the boundaries between them are not entirely distinguishable. Interviews with parents tended to follow a more conventional, semi-structured interview format, but when children and parents were present together in the same interaction, there was an ebb and flow between an interview-like encounter and periods of engagement in more participatory activities and observation. For this reason, I came to label instances of data collection with children and their parents as '"research encounters," a term I use to express the variation within research activities that comprised data collection with children and their parents in this study.  I am writing here as if I personally conducted all the interviews, and that is not the case. Some of the research encounters with children and parents were conducted by research assistants in the project. For clarity, I am using the personal pronoun to refer to my position in this project. Where research assistants have been involved in data collection, I endeavor to make this explicit in my account of research encounters. See Appendix E for the list of questions originally developed to guide the initial semi-structured interviews with children and their parents. -62-  Research encounters then, took many forms. I met with children and their parents in their homes, usually on weekday evenings. This seemed to be the time that fit best into family life. Other times, I joined children and parents when they went to clinic visits, and sat with them as they talked with health care providers. A t yet other times, I spent time with children as they spent hours in clinic, receiving treatment - usually medication infusions or hemodialysis. A s such, the data set is comprised o f a range o f types o f research encounters: some with children, others only with a parent, yet others in which parents and children participated together. Originally, I had hoped to have the opportunity to interact with children alone, and I had many such opportunities. Where both parents and children were present, in more structured sorts o f encounters, children were given a choice o f whether they wanted to be interviewed alone, or whether they wished to have their parents present. In most instances, children chose to have their parents present. In several instances, when children and parents were together in the same interview-type encounter, parents would excuse themselves for a period time to allow the child some time with alone with me. Figure 2 illustrates the proportional amount o f research encounter time spent with children only, parents only, and where children and parents jointly participated.  Combined  Child alone  parent and  33%  child 46% Parent alone 21%  Figure 2. Participant composition o f research encounters with chronically i l l children and their parents. -63 -  The number o f research encounters with family units ranged from a single encounter in the cases o f five o f the children and their parents to, i n the case o f one child and his parent, ten research encounters spanning a period o f eleven months. Research encounters with children and parents took place in a variety o f settings, including family homes, outpatient clinic settings, and hospital inpatient units.  Engaging with children In general, the goal o f the encounters with each child was to learn about the child, the child's daily life, and where possible to hear about the kinds o f decisions that were made in the child's life. Strategies for data collection with children were based on theory and research underpinning clinical practice guidelines for communication with children and practices outlined in existing literature about research with children (Docherty & Sandelowski, 1999; Irwin & Johnson, 2005; Nespor, 1998; O'Kane, 2000; Thomas & O ' K a n e , 1999, 2000). Certain understandings, including the following, were important i n planning and conducting encounters with children:  •  school-aged children sometimes endeavour to please adults and may tailor their behaviour or answers to achieve that goal  •  children's responses to open requests such as "what happened?" tend to be richer than their responses to more specific questions (Goodman & Schwartz-Kenny, 1992)  •  children tend to be more responsive when they are engaged in participatory activities than when expected to engage in dialogue with adults (Wesson & Salmon, 2001)  •  children are more likely to participate fully i f they contribute to the agenda o f the interview (Alderson, 1993; Mauthner, 1997; Thomas, 2000)  •  children, like adults, w i l l shape their behaviour and responses in relation to perceptions o f privacy and vulnerability within the relational context, and in relation to other priorities in their lives (Docherty & Sandelowski, 1999; Nespor, 1998)  -64-  In order to engage children as fully as possible, a number o f participatory strategies were developed. These activities had two purposes. The first purpose was to create a vehicle that facilitated connection with the children, fostering connection and establishing some common ground. The second purpose was more directly related to the research goals: that is, to foster conversation about the children's experiences o f health and illness, including their views o f health care decisions. The first o f these participatory activities to be developed was an adaptation o f a decision-making grid originally designed by Thomas (2000) and O ' K a n e (2000). This was a chart where the axes represent decisions i n the child's life and the people involved in those decisions (see Appendix F). O n this grid, children indicated their perceptions o f how much say each person had in each decision, degrees o f "say" represented by "traffic light" stickers: red for "no say," yellow for "some say," green for "a lot o f say."  Several children in this study completed this decision-making grid, and the process o f engaging in this activity often fostered interesting conversation. What was particularly useful about the conversations generated through this activity was the evidence that the concepts o f "decisions," "decision-making," and "choices" were not a particularly good fit for many o f the children in their descriptions o f their everyday lives. This was particularly true for the younger children, but seemed to hold to be generally true for the older children as well. The conceptual work o f identifying decisions fell to the researcher as the children talked about their everyday experiences o f home, school, friends, and family.  In addition to the decision-making grid, a variety o f other activities were used throughout the study to foster engagement with children, and many o f these appear i n the findings presented in chapters four and five. Activities included drawing, crafts, and games. One other activity, developed midway through data collection, was "conversation cards." These were a series o f laminated cards with pictures and words that could be used to spark conversation with children - 65 -  (see Appendix G for examples). These were developed in response to early analysis revealing that what mattered most to children could best be understood by paying close attention to their everyday lives. Hence, the cards depicted topics and activities such as "the clothes that I wear," "my parents," "parties," and "rules." Not surprisingly, children varied in their capacity or desire to verbalize their thoughts and feelings about what was important to them, including their beliefs about their health conditions and the decisions related to those conditions. About certain topics, some children were very clear: "So one of these things I don't really like is having needles. That was mostly the hardest thing." About other topics, some children were less clear, sometimes uncertain, sometimes apparently uninterested. A small number of the children seemed to grasp something of the nature of this inquiry readily and with ease. Two of the 12-year-old boys, and one 11-year-old boy provided accounts of their experience of chronic illness and their understanding of some of the decisions they face with little assistance from me or their parents. These children were able to cast their experiences of chronic illness in a way that seemed different from the other children, and in that way provided a different kind of data in the analysis of this study.  Engaging with parents As mentioned, I planned to conduct at least one semi-structured interview with one or both parents of each child recruited into this study. And, as I have described, many interviews were conducted with the parents alone, but many were also conducted with children present. When possible, these interviews centred on the parents' experiences of managing their children's chronic health condition, the decisions that were made regarding the child's care, and the factors that shaped those decisions. Parents conveyed much about their children and provided and a view of the children and their desires that, in many instances, articulating the children's own apparently deeply held intentions and desires, understandings that might not have been available -66-  to me in my own encounters with the children. In many instances, parents' accounts resounded with the kind of intimate knowledge that parents gain as they live with their children and manage their children's health conditions. While most of the data elicited from parents was gained through direct encounters, some of what I learned from them was conveyed in telephone. conversations or electronic mail. Capturing the data from research encounters with children and parents Where possible, encounters with children and their parents were recorded and transcribed verbatim. Where drawings, photographs, or other artefacts were collected, these were linked to the participant's code and the appropriate transcript, and included in the data set. Fieldnotes were written after each research encounter, including telephone conversations. Electronic communications were saved and entered into the data set. All this data was entered into qualitative research software (QSR NVivo™) for tracking, organizing, and eventual coding.  Other Sources of Data Three interviews with nurses were conducted early in the study. These interviews with experienced pediatric nurses focused on the nurses' experiences with and beliefs about children's abilities and opportunities to participate in health care decisions. These interviews varied in length from 40 to 65 minutes. Each was recorded, transcribed, and entered into the data set.  In addition to the semi-structured interviews with nurses described above, health care professionals, primarily nurses and physicians, became part of the data set as they appeared in research encounters with the children and parents of the study. In every instance where the words and actions of specific health care providers were recorded, the health care provider was informed of my presence and role and the purposes of the study. In most instances, these health  -67-  care providers had been exposed to various efforts to publicize the purpose and process of the study, and so were familiar with me and the study. In addition to data collected through research encounters with the children and their parents, and through interviews with health care providers, other sources of data were collected and entered into the data set as they became relevant. These included media accounts depicting the experiences of three of the children in the study, newspaper and magazine articles documenting cases where children or parents questioned or refuse medical treatment or where health care professionals raised concerns about the ethical care of children, and newspaper accounts of issues of access to health care for particular groups of children with chronic health conditions. Other documents that became relevant included institutional policies about informed consent and families' access to information. Finally, publications produced by certain interest groups proved relevant to the analysis in this study. These included groups that advocated for children with specific health conditions and groups that championed movements such as familycentred care in the institutional settings.  Data Analysis The Analytic Process Data analysis proceeded concurrently with data collection, with early data analysis guiding, at least to some extent, the ongoing process of theoretical sampling. Broadly speaking, analysis took a constant comparative approach, a process through which early data was compared to the understandings implicit in the analytic framework and where later data was compared to emerging conceptual accounts of decision-making in children's health care (Layder, 1998; Thorne, 2000). Analysis was facilitated by repeated immersion in the data, asking questions of the data that addressed the key question of "what is really going on?" Where  -68-  transcripts or fieldnotes seemed rather devoid of relevant data, I was prompted to ask questions about what it was that I was not noticing; why it was that I couldn't see what I thought I was looking for. The purpose Of this constant comparative analytic process was to support openness to a wide variety of ideas and concepts (Lincoln & Guba, 1985; Sandelowski, 1995a) and to call into question pre-existing assumptions and conceptual positions. Questions (drawn from the theoretical underpinnings of the analytic framework) that guided initial interrogation of the data included: •  What kinds of decisions were being made? What characterizes these decisions?  •  Where is the child in the decisional process? Who is the child in the decisional process?  •  How did the child express (or recount expressing) her or his wishes and desires in regard to particular decisions that were made?  •  How was the child's participation shaped by the nature of the health condition and its treatments?  •  What social and political influences shaped the process of decision-making?  After spending time considering and interrogating the data, I began the process of assigning tentative labels in an effort to classify segments of the data. In some ways, this was the beginning of the conceptualization of the findings that I present in chapters four and five. This process of beginning to assign labels also assisted me in viewing new data through an emerging conceptual lens, a process that revealed certain nuances, contradictions, and paradoxes that characterize the phenomena of children's participation in chronic illness decision-making. The overall goal of this process was to target the theoretical importance of segments of data in order to begin to make sense of the large volume of data produced in this study. Codes and conceptual views that were established remained provisional; they were modified and abandoned, or  -69-  confirmed and retained, as required by the unfolding of new data and shifting theoretical understandings. Specific Analytic Challenges As I engaged in the diverse activities that comprised data collection for this project, and as I began analysis of decisions in the health care of chronically ill children, I found myself exploring intricate and complex places of human interaction: sites where it seemed that children's perspectives were created and expressed in diverse and interesting ways, and where, for what appeared to be complex reasons, they could be heard or dismissed. My initial analytic efforts were geared toward the identification of decisions within these spaces, and these efforts were followed by activities intended to make some sense of children's participation and adult views in relation to each decision. Inadequacies in this formula soon become apparent, as did problems with the original concepts of decisions, participation, and interests.  Two challenges arose related the concepts of decision and decision-making when I considered these ideas in light of the origins of the study and the purposes of the project. The first challenge related to the difficulties involved in judging exactly what constituted a decision. A related and more serious challenge was that the concepts of decisions and decision-making tended to exclude what intuitively seemed to be important dimensions of children's experience when we consider their positions as fully human beings in negotiations of matters that influence their lives. Evidence of the children's status in the matters of their matters of their lives, and particularly their contribution to those matters, stretched my understanding of the notions of decision and decision-making. Isolating decisions and decision-making processes At the beginning of this study, moments of decision-making were anticipated to be windows into dimensions of children's lives that have moral and practical significance. The term -70-  "decision" was defined as "a conclusion or resolution about how to proceed i n a health care matter when more than one option exists." Broadly understood, decisions were taken to be distinct sites o f analysis where important dimensions o f child-adult interactions were made visible, where evidence o f adult perspectives on children's interests would be manifest, where the nature and extent o f chronically ill children's contributions to the affairs o f their lives could be seen. In this view, for a decision to be present, a problem or issue must be identifiable, and the resolution o f that problem or issue must include some sort o f deliberation. So, strictly speaking, to make a claim that a decision was present, three elements must exist: a problem, alternative solutions, and a process o f deliberation. 0  Adhering to these criteria, certain decisions could be discerned in the data, such as deliberations about the timing o f transplants, about whether hemodialysis o f peritoneal dialysis would be most appropriate for a child, and about whether a child could go to summer camp. Children engaged i n decision-making processes with their parents around topics like how and when they would engage in social or athletic activities, about the particulars o f day-to-day activities such as what to eat, and in some instances, discussions o f treatment options.  More often however, as children talked about matters o f importance to them, concepts o f choice, participation and decisions were rarely articulated. They spoke about what mattered to them, what they thought about those matters, but only rarely o f what choices were offered to them and the nature o f their contributions related to those choices. A s a researcher, I was aware of the potential harm that could occur i f children were pushed down pathways o f thinking that are incompatible with how they understand their lives. Hence, throughout the study I was very cautious to avoid leading children into interaction regarding issues about which they have little input; rather, I waited for their lead. A s a result, what exists in the data are a large number o f descriptions by children o f issues that are important to them. Within these are many instances o f -71-  decisions: a few where clearly the child and/or the parent engage in active deliberation about an issue or problem, but more often where there are some discernable dimensions of what constitutes decisional processes. Adding to the analytic challenges of isolating decisions and decisional processes within the data is one further problem: distinguishing health care decisions from the other decisions in the children's lives. Particularly for children, the experience of their chronic health condition is deeply enmeshed in their experience of the many other dimensions of their lives: school, sports, play, and family. I depict these phenomena in more detail in chapter four, presenting them as important findings in making sense of decisions in the lives of chronically ill children.  Participation as a partial view of children's agency At the commencement of this study, participation was conceptualized as the nature and extent of children's contributions to decisions that are made, including their opportunity and freedom to engage in decision-making processes. As I will demonstrate in the findings, several aspects of the children's involvement in decision-making processes didn't fit within the original view of participation; consequently, those views were called into question in the analytic process. The nature of participation—what we are looking for and how we know we have found it— was a challenging questioning that arose in the analytic process. If participation was understood as a sort of indicator of children's autonomy and agency in decisional processes, then how do I make sense of those instances where children appear uninterested in certain decisions, or when they seek their parents' assistance in formulating and expressing their views? The answer demands a richer description of the nature of children's participation, a task that I engage with in chapter four.  -72-  Ethical Dimensions of the Project A s a vulnerable group, children warrant particular attention in regards to ethical considerations in research design and implementation, particularly with issues o f consent, voluntariness, confidentiality, and privacy (Graue & Walsh, 1998; Holmes, 1998; Medical Research Council o f Canada, Natural Science & Engineering Research Council, & Social Sciences and Humanities Research Council o f Canada, 1998). Extensive theorizing and debate has surrounded the issue o f research with or for children. A t the heart o f all these debates is the question o f how children can be protected from harm by research processes, yet included i n ways that they might reasonably participate. Often these concerns are framed in terms o f the issues o f informed consent, and issues o f privacy and confidentiality.  Consent and Assent Ensuring that the participation o f children, their parents, and health care providers was voluntary and without coercion was an essential ethical consideration in the planning and conduct o f this study. Many efforts were made to ensure that children and their parents understood the nature and purpose o f the study, and that they comprehended that their participation in the study must be fully voluntary. O n a formal level, written consent to participate in the study was directly obtained from participating parents and health care providers (see consent form in Appendices H and I). In the case o f children, as the legal representatives o f minor children, parents were asked to sign a consent authorizing their children's participation in the study.  The issue o f ensuring children's agreement to participate in research projects is a topic o f ongoing debate. Recently, in her review o f guidelines for ethical research with children, N e i l l (2005) claims that consent should be obtained from children, except in instances where children  -73 -  are unable to comprehend the nature o f involvement and the consequences o f involvement in research. In contrast, Cocks (2006) suggests that a requirement to obtain informed consent from children may have the inadvertent effect o f excluding particular groups o f children from the research agenda to which they need to contribute.  While, after much deliberation, I did not ask children to sign formal consents for participation, their assent to participation was a fundamental ongoing principle guiding all aspects o f this project. Recognizing that children may be i n a particularly vulnerable position when it comes to being fully informed and free o f coercion, the following practice guidelines were established to ensure that the encounters with children met ethical standards. In every interaction with children, I endeavoured to:  •  explain the project to the child and illustrate the child's freedom to refuse to answer questions or to ask to stop the research process;  •  be sensitive to verbal or non-verbal cues that might indicate that a child is reluctant to participate in any portion o f the study, and to respond to those cues in a ways that creates opportunities for the child to withdraw from the process; and  •  encourage children to contribute to the agendas o f research encounters interviews, inviting children to talk about what was important to them, and to discuss what they thought were the significant events o f their days. (Morrow & Richards, 1996; Thomas & O'Kane, 1998).  In their research into chronically i l l children's consent to research participation, Broome and Richards (2003) found that children's relationships with powerful adults in their lives strongly influenced their beliefs about participation, and that children's consent to participation tended to be highly relational in nature: that relationships with parents and health care professionals were important components o f children's assent or consent. In many instances, this  -74-  seemed to be the case in this study. Children frequently, but not always, looked to the parents for support in making a decision about whether to participate in the study or not.  The ongoing and relational dimensions o f children's assent to research were evident throughout the study. In one instance, immediately following an explanation about the purposes of the research and the nature o f data collection, when asked why she thought that the researcher was present, 11-year-old Jenna responded, "I have no idea they didn't tell me anything." In a second research encounter with 7-year-old E m m a and her parents, I had just completed reminding her about the project and emphasizing the voluntary nature o f her participation when the following exchange took place:  Interviewer: What do you think, Emma, is there anything in there that's causing you any concern?  Emma:  No.  Interviewer: A n y questions you might have about what we are up to here? Emma:  I was thinking . . . I had one [question] when you came here.  A little later, after describing what she understood about the research project ("diabetes.. .and asthma"), E m m a remembered her question and asked me, " H o w much people's houses you've been to?" In this instance and others, while I was most concerned with ensuring that children understood something about the study and that they appreciated that their contributions must be entirely voluntary, these issues often seemed less important to the children themselves. For this reason, part o f my work in this study was to assist children in understanding in some way what we mean by research, and what it might mean to agree or not to agree to be part o f projects like this.  -75 -  Confidentiality A s it is in all qualitative research projects, confidentiality is an important ethical consideration. Throughout this project, many efforts were made to ensure that the data collected with children, their parents, and health care providers were protected throughout the research process and in the reporting o f the results. Research practices designed to optimize confidentiality included assigning pseudonyms to all the children in the study, assigning code numbers rather than children's and parents' names to the data files, and changing identifying details in the reporting o f case examples from the data. While confidentiality guarantees for children are limited by constraints related to the child protection responsibilities o f researchers and health care professionals, no such instances arose in my encounters with the children in this study.  29  Rigour in Interpretive Description M y goal in this project was to represent the voices o f the children and their parents honestly, openly and respectfully. M y goal was also to interpret what I heard and learned in order to render children's experiences o f participation more visible and to locate those experiences in the broader field o f health care practice and policy. A s a researcher I was in a privileged position where children and parents trusted me, and where they shared their experiences with me and allowed me access to a portion o f their lives. I was determined that this research would represent these children's contributions to decisions in a manner true to their experiences, and in a manner that would be informative to those who work with them. For these interpretations to be believable and justifiable, I needed to articulate an approach to scientific rigour that would guide this study.  29  Had concerns related to child protection arisen, I would have followed the established protocols for reporting such incidents. In most cases, this would have been a direct reporting to the Ministry of Children and Family Development. -76-  In 1985, Lincoln and Guba set out four criteria that they believed to be measures o f trustworthiness in qualitative inquiry: credibility, transferability, dependability, and confirmability. Since then, the criteria by which qualitative research ought to be judged have been the subject o f extensive debate (e.g., H a l l & Stevens, 1991; Lather, 1991; Lincoln & Guba, 1985;  Sandelowski, 1986, 1993; Thorne, 2002). These debates have variously grappled with  topics such as differences between quantitative and qualitative inquiry and the consequent translation into measures o f quality, and whether strict adherence to specified research traditions (and the adoption o f the corresponding epistemological and ontological commitments) is essential to the development o f credible and trustworthy knowledge.  In addition to these more general debates about rigour in qualitative projects, quality within so-called "generic" approaches to qualitative research have been the subject o f additional scrutiny (Caelli, Ray, & M i l l , 2003; Sparkes, 2001). The term generic has been used to describe research methodologies such as interpretive description that cross research disciplines, and that may draw on a variety o f methodological tools to create research approaches tailored to specific knowledge generation projects. Caelli, Ray and M i l l emphasize the importance o f clear and well articulated decisions in generic projects, including for example, a careful depiction o f the relationship o f methodology to method.  It was within this array o f perspectives on quality in qualitative research that I needed to critically consider the integrity o f this project. Specifically, I needed to understand what theoretical and practical problems might threaten the validity o f the project, and what techniques might enhance its credibility and relevance. In one sense, I have come to understand rigour as the processes through which the scientific process is shown to be consistent with the researcher's claims about knowledge and knowledge development. In chapter 2,1 made the following claims about inquiry in this project: (a) that analysis from several philosophical or theoretical -77-  viewpoints would be essential i f useful and practical insights were to be generated; (b) that sustained attention to the very human problem o f children's position in contexts o f health care decision-making would be vital; (c) that all interpretations would necessarily be viewed as contingent and partial; and (d) that the complexities o f children's and parents experiences o f decision-making would not be reduced or dismissed. In the end, m y efforts to ensure scientific integrity in this project involved many activities that attended to these claims and spanned all aspects o f the study, beginning i n the early stages with the formulation o f the research questions, continuing through the implementation phases o f the project, and into the writing o f this dissertation. Throughout the findings chapters o f this dissertation and within the discussion chapter that follows, I endeavour to make my analytic processes explicit. To do so, in some instances I provide alternate interpretations o f some events, or qualify the interpretations I provide.  Credibility Credibility in the project demanded an awareness of, and attention to, the effects o f myself as researcher—in all my humanness, my power, and my vulnerabilities—across all aspects o f the research project. I came to this project with certain beliefs and assumptions that shaped the project and that influenced what I was looking for, what I could see, and where I looked as endeavoured to learn about children's participation i n health care decision-making. For example, I held certain beliefs about children's positioning in this world. I believed that children were often dismissed or ignored in matters that were important to them, and assumed this might be the case with children who are chronically i l l . M y perspectives on this were grounded in my experiences as a pediatric nurse, as a mother, and as having been a child once myself. Reflection on these beliefs was paramount in the earliest stages o f the project, particularly as I worked to establish the research questions and as I decided what theoretical approaches held relevance in  -78-  this inquiry. R e f l e c t i v e j o u r n a l i n g b e c a m e  this research project a n d h o w  T h e credibility o f m y  a means  through which I made  that s h a p e d the r e s e a r c h p r o c e s s  findings m u s t also  sense o f w h o  intricately related to  relationships that d e v e l o p e d b e t w e e n the c h i l d r e n a n d their parents a n d m e  single  There  encounters  collection  in audio recordings  transcripts. In these single encounter interviews, c o n n e c t i n g w i t h the c h i l d r e n c o u l d  endeavours  to  the  g e n e r a l l y not c o n d u c i v e to the  r i c h a n d d e s c r i p t i v e d a t a c o l l e c t i o n , at least n o t as m i g h t b e m a n i f e s t  able  as researcher.  is n o d o u b t that t h e q u a l i t y o f t h o s e r e l a t i o n s h i p s v a r i e d w i d e l y . F o r e x a m p l e ,  w i t h children, particular in b u s y clinic settings w e r e  in  and product.  be j u d g e d b y the quality o f the data I w a s  gather. I t h i n k that the q u a l i t y o f the d a t a i n this project w a s  c h a l l e n g i n g . I s o m e t i m e s felt a w k w a r d i n m y  I was  and  be  to steer t h e m t o w a r d c o n v e r s a t i o n ,  and  g r a p p l e d w i t h sense that I m a y b e i m p o s i n g o n t h e m s o m e t h i n g that they r e a l l y d i d n ' t  u n d e r s t a n d . C o n s t r a i n t s o f t i m e , w i t h insufficient t i m e to establish r a p p o r t w i t h c h i l d r e n , d i d , i n  s o m e instances  detract f r o m the quality o f the data collected.  the c h i l d r e n a n d their parents p r o d u c e d d a t a that w a s  children and parents w h o  There were times  In contrast, other encounters  full a n d rich. O f t e n these were  I c a m e to k n o w o v e r a p e r i o d o f several e n c o u n t e r s ,  i n this study w h e r e  I questioned  despaired o f the p a u c i t y o f rich a n d detailed stories  descriptive data from m y encounters  s e e m e d u n r e l a t e d to w h a t I w a s  S o the quality o f data w a s  me, and what I could  even  and  w i t h parents, but m u c h o f w h a t the c h i l d r e n said or d i d  or fragments  o f stories  evident in  the  i n the data shifted, a n d I  that c h i l d r e n t o l d m e  influenced not o n l y b y the nature o f m y  children a n d their parents, but was  always.  from children. I h a d plenty o f detailed  interpretations I present i n chapters f o u r a n d five, w h a t I c o u l d see  ways.  but not  the  the o v e r a l l quality o f the data a n d  s e a r c h i n g for i n the data. A s w i l l b e c o m e  to u n d e r s t a n d the k i n d s o f stories  with  with  in quite  different  r e l a t i o n s h i p to  the  also related to w h a t I r e c o r d e d , w h a t a p p e a r e d interesting  see.  -79-  came  to  F i n a l l y , for the f i n d i n g s o f this s t u d y to be c r e d i b l e , the interpretations m u s t  be  justifiable. A s I d e p i c t the interpretations I p r o p o s e as the f i n d i n g s o f this s t u d y i n c h a p t e r s  a n d five, I e n d e a v o u r to depict the l o g i c trail that l e a d m e  instances,  m a n y  the interpretations are fairly c l e a r l y l i n k e d to the a n a l y t i c f r a m e w o r k I p r e s e n t e d  chapter two. A s I m o v e  perspectives,  five,  to those interpretations. In  o n into chapter  five,  I start to d r a w o n a w i d e r r a n g e o f  particularly geographical concepts  o f space  I s u m m a r i z e the influence o f those perspectives  l o g i c that f o l l o w s  chapter  a n a l y s i s , a n d e n d e a v o u r to d e p i c t  the  t h r o u g h o u t the r e m a i n d e r o f the chapter. T h e credibility o f the f i n d i n g s rests  the extent to w h i c h the interpretation I present  true for those w h o  in  theoretical  a n d place. A t the b e g i n n i n g o f  on m y  four  is c o n v i n c i n g , d e f e n s i b l e  in the data, a n d  on  rings  h e a r it.  Relevance In a d d i t i o n to the establishing c r e d i b i l i t y , r i g o u r i n interpretive d e s c r i p t i o n  attention to the r e l e v a n c e  o f the p r o j e c t a n d the f i n d i n g s to t h o s e w h o s e l i v e s are a f f e c t e d  p h e n o m e n a under investigation.  In particular, in this project m y  interpretations m u s t be scrutinized for their m e a n i n g for nurses  c h i l d r e n a n d for p o l i c y m a k e r s as t h e y  one  effort to address this aspect  feedback  grapple with decisions  o f e n s u r i n g integrity, as m y  in various p l a c e s — f r o m expert nurses  focused conference,  demands  and through two  i n the  presentations  field,  interpretive activities  by  and  as t h e y w o r k w i t h c h r o n i c a l l y ill  that affect  these children's lives.  interpretations evolved, I  and from nurses  at a c a d e m i c c o n f e r e n c e s .  at o n e  complicated project o f including children in health care decisions.  assisted m e  examples  that c h a l l e n g e d or c o n f i r m e d m y  i n the clarification o f m y  concepts.  specialty  Nurses in clinical  In e v e r y instance, the  interpretations or asked questions  F e e d b a c k f r o m p e e r s at t h e c o n f e r e n c e s  -80-  In  sought  practice c o n f i r m e d that the e m e r g i n g interpretations p r o v i d e d a useful m e n t a l heuristic for  raised n e w  the  this  nurses  that  prompted  further reflection on assumptions that underpin the concept o f participation, and caused me to reflect on and grapple further with the intricacies o f the persistent agency-structure issue.  Table 4 summarizes the main principles that guided my efforts to ensure scientific integrity i n this project, and lists the corresponding techniques and activities I engaged i n to build credibility and relevance in this project.  Summary A s I listened to children and parents, as I spoke with health care professionals, and as I engaged i n critical questioning o f the assumptions that underpinned the study, my understanding o f what it might mean for chronically i l l children to participate in health care decisions, and what is important about that participation, began to shift. The data set generated in this study created challenges that caused me to rethink concepts o f participation and decision-making, to begin to understand that what children were saying was important to them in new ways, and to begin to comprehend what might stand in the way o f children's full contribution to decisions related to their health care. In chapters four and five, I describe what I have come to understand as the constituents o f children's voices when it comes to health care decision-making and my endeavours to link these notions o f participation and decision-making to the positioning o f children within relationships and within institutions  - 81 -  Table  4  Summary of Principles and Techniques Employed to Ensure Scientific Integrity  Techniques Employed  Criterion  Principles  Credibility  Explicitly account  for  p r e s e n c e o f the researcher the research  A r t i c u l a t e the interrogation o f  the in  i n reports o f the  analytic  process a n d i n the interpretations o f  process,  particularly i n the  assumptions  embedded  analytic  the  data  process  Ensure a rich data base m a x i m u m variation t h e m e s related to  with  M a x i m i z e exposure  on  sample  size, with  to several  extended  participants  children's Theoretically sample  according  to  participation demographic and phenomenal  variables  D r a w o n multiple data sources: accounts,  parents'  policy documents,  Seek  accounts, media  children's  observation,  reports  out children a n d parents w h o  able to articulate their e x p e r i e n c e s participation in health care  m a y  be  o f  decision-  making  A c c o u n t for decisions,  Provide adequate justification  analytic  and  interpretations, account  the  incorporation of  multiple  the data  of  for variations  in  set  perspectives  Relevance  L o c a t e the p r o b l e m questions i n the  and  theoretical  a n d applied traditions  of  E x p l i c i t l y describe the foundations  practice  o f the research p r o b l e m  and  questions  nursing S u s t a i n attention to the c l i n i c a l o r i g i n s the p r o b l e m t h r o u g h o u t data analysis into the reporting o f the  -82-  findings  of  and  CHAPTER 4 CHILDREN's VOICES IN CHRONIC ILLNESS DECISION-MAKING  Introduction What I have learned about children's participation in health care decision-making has been learned in and through my many encounters with the children and parents in this study, through reflection on the contexts in which decisions were made, and i n conversation with health care providers. In this chapter and in chapter five, I present my interpretations o f what I saw and heard; what I came to understand as I reflected on questions o f what constituted the children's participation, and as I thought about the contexts where decisions unfolded.  M y analytic process was guided by a curiosity regarding exactly what we can know about what children want, and how those intentions and desires are taken up i n actual moments o f decision-making. In addition, my thinking was continually challenged by the question o f how particular interpretations might assist us, as health care professionals, to develop more sensitive means o f fostering children's participation. So, while what I heard and saw in my encounters 30  with children and their parents could be understood in many different ways, what I offer in these chapters is an interpretation that reflects my concern about children's position i n matters related to their health care, and my curiosity about what health care professionals might be able to do to ensure that children are cared for in an ethically sound manner.  Questions regarding what constituted children's intentions and desires, as well as the question o f what might count as the expression o f those views, persisted from the earliest days o f  3 0  In the interpretation o f the data a n d the presentation o f these f i n d i n g s , I h a v e r e p e a t e d l y returned to the v e r y p r a c t i c a l q u e s t i o n that p r o m p t e d this i n q u i r y i n the first p l a c e : H o w m i g h t health care p r a c t i t i o n e r s safely a n d e t h i c a l l y foster c h r o n i c a l l y i l l c h i l d r e n ' s p a r t i c i p a t i o n i n health care d e c i s i o n s ? T h i s p r i v i l e g i n g o f the c l i n i c a l o r i g i n s a n d p r a c t i c e c o n s e q u e n c e s o f k n o w l e d g e is a f u n d a m e n t a l p r i n c i p l e o f interpretive d e s c r i p t i o n ( T h o r n e et a l . , 1 9 9 7 ; T h o r n e et a l . , 2 0 0 4 ) . - 83 -  analysis  in this project. I b e g i n m y presentation  p o r t r a y i n g the intricacies o f w h a t I c a m e  the c h i l d r e n ' s v o i c e s v a r i e d i n their  intentions  o f t h e f i n d i n g s o f t h i s s t u d y at t h i s  to u n d e r s t a n d as the c h i l d r e n ' s v o i c e s .  resonance,  point,  I illustrate  that is, the extent to w h i c h c h i l d r e n f o r m u l a t e d  a n d desires i n r e g a r d to certain d e c i s i o n s ,  and in addition, delivered those views  the contexts o f d e c i s i o n - m a k i n g . T h e s e c o n d part o f this chapter addresses the m o r e  issue o f children's standing in places  o f d e c i s i o n - m a k i n g , a s k i n g the questions:  relevance  a m o n g other voices in decisional  into  specific  to w h a t  extent  are children's v o i c e s h e a r d i n these contexts o f d e c i s i o n - m a k i n g ? A n d , to w h a t extent d o  voices achieve  h o w  those  processes?  Discerning Children's Voices N o t surprisingly, p e r h a p s b e c a u s e o f the diversity o f the c h i l d r e n i n this study,  variation existed i n the nature o f decisions  made  c h i l d r e n w a n t e d i n r e l a t i o n to t h o s e d e c i s i o n s ,  intentions  a n d desires.  3 1  i n the c h i l d r e n ' s health care, i n w h a t  a n d i n the patterns o f expression  Hints of what children wanted  could be found in m a n y places,  in what children explicitly articulated, a n d i n their parents'  obvious places,  accounts,  as w e l l  as w i t h i n  s u c h as i n c h i l d r e n ' s patterns o f e n g a g e m e n t a n d d i s e n g a g e m e n t .  children's voices—those expressions  o f what they wanted  they  were and what they intended were  the  children's  including  less  Discerning  i n relation to p a r t i c u l a r issues  r e g a r d i n g their h e a l t h c a r e — r e q u i r e d attention to the m a n y a n d d i v e r s e m e a n s  who  o f the  wide  through  which  manifest.  At various times as the analysis of the data proceeded, I endeavoured to distinguish between what children wanted (i.e. their intentions and desires) and the means by which these intentions or desires were expressed. In some instances, this distinction seemed possible. For example, when a child clearly wanted specific food to eat, or did or did not want a certain medical procedure, the content of the expression seemed obvious and the means of expression could be isolated from it. As I demonstrate in this chapter and chapter 5, however, my efforts to isolate children's intentions from the means of expression created two problems. The first was that such a process presumed that the children's intentions pre-existed their action (or expression). The second problem was closely related to the first: that in requiring a distinction between intention and expression, much of what children contributed to decisions in this study would be rendered irrelevant. -84-  The Many Expressions of Children's Intentions C o n s i d e r these three b r i e f e x c e r p t s f r o m t r a n s c r i p t s a n d o b s e r v a t i o n data. E a c h is, i n a  m o r e or less precise fashion, a n expression depicting s o m e  dimension o f what a child thought  or  wanted:  " D o e s that m e a n I h a v e to h a v e a n e e d l e ? " ( A l e x a n d r a , a g e  A s  D r . K . listens to Jessica's (age  o b s c u r i n g the s t o m a o f her  " D o  Words,  silences,  gestures,  chest,  3 2  she stands upright, both  hands  gastrostomy.  y o u k n o w , even w h e n he was  little f r i e n d s . " ( L u c a s ' s  8)  10)  i n the hospital, w h a t gets h i m h a p p i e r ? H i s  m o m )  singing, d r a w i n g s : these are a f e w  o f the m e a n s t h r o u g h w h i c h hints  the c h i l d r e n ' s intentions a n d desires w e r e manifest. I noticed m a n y w a y s  m a d e k n o w n : b y the c h i l d r e n themselves,  that these v i e w s  o f  were  b y their parents, a n d o n occasion, b y health care  p r o v i d e r s . I c a m e to u n d e r s t a n d that rarely, i f ever, c o u l d a single e x p r e s s i o n b e h e l d as a true  a n d final representation o f a c h i l d ' s intentions. Importantly, w h a t the c h i l d r e n w a n t e d a n d  they expressed those desires were reflections o f w h o  before, and, in m a n y instances,  experiences  o f everyday  illustrations o f s o m e  they w e r e as p e r s o n s , o f w h a t h a d  h o w  gone  o f the c o n t r a d i c t i o n s that c h a r a c t e r i z e d their  life.  Children's own representations A s the e x a m p l e s  a b o v e illustrate, the children i n this study presented their o w n  views  about w h a t m a t t e r e d to t h e m i n v a r i o u s w a y s , m o s t o b v i o u s l y t h o u g h w h a t they said, but also  h o w they acted and, in some  ways, through their silences.  vehicles t h r o u g h w h i c h the c h i l d r e n represented their o w n  32  Speaking, acting, a n d silence were  in  all  intentions.  In an effort to sustain confidentiality, all the children and parents in this study have been assigned pseudonyms. In addition, in several instances where details of a child's experience might identify the child, those details have been changed. -85  -  Speaking "So one o f these things I don't really like is having needles. That was mostly the hardest thing." L i k e several o f the other children, 10-year-old Alexandra was unequivocal about one thing, her fear o f needles. Although Alexandra was very clear about her intentions and desires when it came to injections, not all apparent intentions were so strongly and persistently held. It seemed that the children varied widely i n their willingness and capacity to convey verbally what was important to them. A s one might expect, the older children tended to provide the most detailed verbal accounts o f what mattered to them, while the accounts o f younger children tended to be less detailed and moved quickly from topic to topic. Regardless, within the data are several instances o f children's verbal expressions o f their intentions in actual moments o f decisionmaking, children o f all ages verbally express certain intentions and desires. These verbal expressions reflected more than the language and cognitive abilities o f the children. I had a clear sense that what children said was shaped to fit the relational dynamics o f the decisional context.  During a routine clinic visit, a decision about 7-year-old Charlie's diabetic diet was being revisited. The following is a fieldnote excerpt describing the decisional process. Catherine [Charlie's mom] mentions that Charlie has complained that his morning snacks at school are too large—that at recess he feels full and has to make himself eat what his mother has sent. Catherine explains to the clinic nurse that she understands that changing the carbohydrate content o f any snack or meal has implications for insulin.dosage and for food portions at other meals. Catherine looks at Charlie and asks, "What do you think about your recess snack at school?" Glancing toward his mom, Charlie responds, "It is too much at school. It is ok on weekends." What Charlie wanted i n this instance was made at least partially clear by his words: his snacks are too large at school; he wants to have less to eat. A s was often the case i n such instances, explanations o f why he thinks this, and the nuances o f his feelings and reasoning, were not made explicit, at least in the immediate context o f the clinic visit.  -86-  In this instance, I was conscious that Charlie's words were generated and presented in the presence o f six adults: his mother, father, and grandfather; the clinic nurse; a medical student; and me. Often in this kind o f decision-making, where a decision about children's care was being made in a conference-like setting, children tended to say little. What was clear to me here was that the words Charlie spoke represented conversations that had gone on over time within the context o f his day-to-day life. There was much that I did not know about what was important to Charlie in this instance, or about the meaning the particular dietary requirements had i n his everyday life. Charlie's words reveal something about his intentions and desires, but clearly are only a partial representation, o f what matters to him.  Often, because o f the nature o f the data, I learned about many o f the children's spoken representations o f intentions and desires through second-hand accounts: either children's own descriptions o f what they had said i n specific past instances, or in their parents' accounts o f what they had heard their children say. A m o n g the most articulate o f the children in this study was 12year-old Anthony. Anthony had a moderate form o f osteogenesis imperfecta (OI). H e described his efforts to explain what he needed to one o f his physical education (PE) teachers at school:  33  W e l l , [in] P E I had a few times last year that I actually had to get a little wise, like a smart-aleck towards the—towards one o f the P E teacher last year. He just wouldn't back down... H e wouldn't do it, so I had to raise my voice and then I got i n trouble for that. In this instance, there are hints o f Anthony's concerns about his safety at school. There are also echoes o f a sense o f injustice, a certain frustration for not been taken seriously in his efforts to advocate for himself.  3 3  I r e c o g n i z e the l i m i t a t i o n s o f m a k i n g c l a i m s b a s e d o n c h i l d r e n ' s a c c o u n t s o f w h a t t h e y s a i d o r d i d i n p a r t i c u l a r instances. A s 1 p r o c e e d i n t h i s a n a l y s i s , I b u i l d a n a r g u m e n t that c h i l d r e n ' s v o i c e s are n o t c o m p r i s e d o f a n y o n e e x p r e s s i o n , a n d that n o n e are i r r e l e v a n t . S o , i n A n t h o n y ' s story, the i m p o r t a n t issue is not w h e t h e r o r not this is an authentic representation o f w h a t r e a l l y h a p p e n e d ; rather, it is i m p o r t a n t as a d e p i c t i o n o f w h o he w a s a n d w h a t mattered to h i m .  -87-  In one instance, a child's language expressions were conveyed electronically. Twelve-year-old Nick said barely a word to me when I met with him and his mother in the clinic. Six weeks later, an e-mail message arrived with these words: Hey its nick and u wonted me to be a part of somtin well yeah thats kool so u can email me any time u ahve time alrighty... talk to u soon [sic].  34  Asked about decisions in his life, he responded: i made decisions to not do drinking and drugz and also jobs, i didnt really have any dicison on what medications i was on. I think kids should be able to decied what do and not want [sic]. Nick's words, while few, point to important themes that would become central to my understanding of children's expressions of intentions: that the important choices in children's lives had to do with their everyday experiences, and that children may sometimes not be included in decisions where they believe that they should have a say.  As reflected here, the children all had their own means of expression, their own language for conveying what it was that they thought and wanted. Perhaps most importantly, what children said reflected more than the content of what they wanted in regards to specific decisions. Their words seemed shaped by the context in which they were delivered. In upcoming sections, I will address this issue more fully.  Acting At the beginning of this section, I included the segment from observation notes where I described 8-year-old Jessica obscuring her gastrostomy as the doctor examined her. Her message in that instance was clear. Without a single word exchanged, her physician perceived her specific  34  Translation: "Hey, it's Nick. You wanted me to be a part of something. Well, yes, that's cool. So you can e-mail me any time you have time alrighty? Talk to you soon." This conversation with Nick continued over the course of two additional e-mail messages, after which I didn't hear from him again. -88-  wish that he not touch her stoma. In that decisional moment, Jessica did not have to put words to what she wanted; her message was clearly conveyed through her action and expressions. In many instances, the intentions embedded within actions were not so easy to decipher. Ethan closed his eyes as the physician approached his stretcher. Leanne grimaced and guarded her arm each time she had to have her blood pressure taken. Without hesitation and with ease, Emma showed me how she tests her own blood glucose levels. Alexandra peered from another room as I entered her home. Children's actions and mannerisms reflected dimensions of who they were and revealed something of what they wanted. As I worked with these children I came to understand that, if children's intentions are broadly defined, evidence of children's intentions could be found in all expressions, whether through words, action, or silence.  Silence To this point, I have been mainly concentrating on children's verbal and behavioural expressions as representations of their intentions and desires. What the children didn't say also deserves specific attention. The children's silences also provided important indications of their intentions and desires. For reasons I often could not know, silence (as the absence of direct expressions about a particular topic) occurred when children changed topics of conversations, demonstrated disinterest, or ignored questions or prompts about topics I thought might be important to them.  Eight-year-old Derek's hesitance to speak about his health condition illustrated the potential contribution of silence to an understanding of a child's intentions and desires. As Derek and I coloured a paper airplane we had constructed (Figure 3), I made a direct effort to elicit his views about his debilitating condition. I asked, "So, while you are doing that, Derek, can you tell  -89-  me about [your condition]? Do you mind talking a bit about that?" He responded, "Umm, no." I persisted.  Interviewer: No, you don't want to? Derek:  It's complicated.  Interviewer: Complicated? Can you tell me one thing about it? Derek:  No... I won a Nintendo game.  Our conversation continued with discussion of the event of winning a video game and the specifics of the game itself. In this instance, I don't know why Derek didn't want to talk further about his health condition. I suspect that he was far more interested at the moment in doing something he enjoyed more than talking about his health condition: colouring and making things. It is also conceivable that he did not want to talk about his chronic health condition. Whatever the interpretation, such silences provided important glimpses, however non-specific and imprecise they might be, into the worlds of particular children.  Figure 3. Derek displayed his paper airplane. He enthusiastically participated in activities and conversation but was reluctant to speak about his health condition.  -90-  Twelve-year-old Sanha's account o f his day-to-day life post-renal transplant was strikingly similar. After several years o f hemodialysis, one year ago Sanha had a renal transplant. Since that time, his parents and health care providers have been concerned that his renal failure might recur, and that his new kidney might be at risk. H i s life now included a regimen o f antirejection drugs along with some diet and activity restrictions. When asked how having a transplanted kidney affected his life, Sanha looked puzzled. After hesitating for a few moments and looking toward his mother (possibly for assistance in answering a difficult question), he responded simply by explaining that one thing he really wanted to do was to take karate lessons. Because o f the need to protect his kidney, he couldn't. Other than that, Sanha had nothing to say about the consequences o f having a chronic health condition—no mention o f doctor's visits, diet, or medications.  That Sanha didn't describe the details o f his health condition, and that he seemed at a loss to articulate any ways in which his life was shaped by therapies and lifestyle restrictions intended to protect his kidney, could be interpreted several ways. Again, it is possible that Sanha didn't feel comfortable discussing this with me. It might be that his health condition was not in the foreground o f his thinking at present. It might be he did not distinguish the activities related to his health condition from activities o f the remainder o f his life in any meaningful way. While I don't know precisely what Sanha's situation was, with h i m as with many other children, I sensed that questions posed about his chronic health condition, including my efforts to isolate choices related to his health condition, seemed incongruent with how he understood his own life:  Parents representing children's intentions In this study, parents spoke passionately about what their children needed, wanted, and desired, and presented these understandings into the contexts o f decision-making in a variety o f ways. In these instances, children's voices could be understood to be represented by their -91 -  parents, an interpretation that raises many difficult and important questions. In one striking example, 9-year-old Scott's mother believed that her son Scott was enduring severe pain, and tried to communicate this understanding to the nurses and physicians who made decisions about pain medication. This mother recounted how she pleaded with nursing staff, "Please give h i m medication, give him stronger medication. H e is in pain and we're not relaxing his heart." In this instance, the mother presented her interpretation o f her child's experience o f pain, endeavouring to make heard what she thought he would intend or desire, an interpretation no doubt grounded in her knowledge o f her child, and located within her experience as a particular child's mother within a complex health care system.  A s in the above example, within the data are many accounts o f instances in which parents interpreted and represented their children's intentions and desires. Ryan's story provides an example o f the complexity o f these representations. Because o f airway problems, Ryan had a tracheostomy inserted soon after birth. When I met Ryan and his parents, Ryan was 9 years old. L i v i n g with a tracheostomy had far-reaching consequences i n his life, resulting i n limitations to activity, difficulties in speaking, the necessity o f intermittent suctioning and cleaning o f the tracheostomy, and the requirement o f constant surveillance by a nurse or parent. A t the time o f data collection, Ryan, his parents, and his health care providers were deliberating about a specific decision: whether or not Ryan's tracheostomy should be removed. Early in our discussion, Ryan's parents explained that Ryan deeply desired to have the tracheostomy taken out, and that over the past months he had repeatedly articulated this desire. They explained that Ryan wanted the tube removed for two very specific reasons: he wanted to swim, and he wanted to be able to go to sleepovers at friends' homes without being accompanied by a parent or nurse.  A s they met with the health care team, Ryan's mother, Heather, represented what she understood as Ryan's intentions. Twice, Ryan was present in the room as she endeavoured to - 92 -  articulate what he wanted. In those instances, she provided opportunity for Ryan to confirm or expand upon what she was saying. In each instance, he merely nodded.  In many such instances, parents o f the children in this study made explicit what they believed to be their children's intentions and desires in regard to specific health care decisions. In both Scott's and Ryan's mother's stories, representations o f their sons' intentions during a specific periods o f decision-making reflected their embodied knowledge o f their children, attention to their children's expressed wishes, as well as, I believe, a certain knowledge o f the health care system wherein these decision-making processes were enacted.  A s in Ryan's story, to varying degrees the parents in this study accepted a responsibility to speak for their children—to represent them in challenging decisional processes— whether the children were physically present or not. This role is illustrated i n 10-year-old Alexandra's mother's account o f her work to smooth the path for her child's next surgery. Alexandra had a well-established and intense fear o f needles, a fear that was foremost for Alexandra and her parents in decision-making about various treatments and procedures. Alexandra's mother, J i l l , presented this fact when decisions were made about surgery, immunization, and dental work. In the following excerpt, Jill described her efforts to ensure that injections were minimized prior to a surgery that Alexandra was about to have, by requesting inhaled rather than intravenous medication for the induction o f anaesthetic. Alexandra is so needle-phobic that one o f the things I like is a gas induction. So I always ask for that up front. A n d I always get the same party line, "This is where you have to ask the anaesthetist." A n d I always say, " Y e s . " .... T h e y ' l l say, " W e l l , we can give her E M L A cream ." I say, "Don't go there because as soon as 35  you come in with the E M L A cream, she knows that means you're preparing her  E M L A ° C r e a m is a t o p i c a l a n a l g e s i a that r e d u c e s p a i n a s s o c i a t e d w i t h n e e d l e i n s e r t i o n s . T y p i c a l l y , the c r e a m is p l a c e d o n the n e e d l e i n s e r t i o n site 2 0 to 3 0 m i n u t e s p r i o r to the a n t i c i p a t e d p r o c e d u r e time. -93 -  for a needle and that gets her started. Y o u don't want to see that." W e ' v e done this before. I know. In many instances, parents' knowledge o f their children's unique wishes and intentions coalesced with their understanding o f responsibility to advocate for their child, and resulted i n specific and explicit positions in matters o f health care decision-making.  In this study, I didn't set out to look at differences in mothers' and fathers' relationships with their children; although the majority o f my conversations with parents were with mothers, fathers also contributed to this work. The parents each knew their children in different ways; individual parents' relationships, and their knowledge o f their children, were unique. The following comment by 12-year-old Anthony illustrates how his mother and father differ, and the consequences that has for decisions related to his health care: Yeah, my dad doesn't spend as much time with me, he's at work from 8 till 5. Since I was young, my m o m has had me from 8 till 5 without dad. M y dad doesn't know m y limitations; he completely freaks out whenever something happens to me. A n d I'm like, "Dad, I broke my fingers." H e ' s like, " O h my G o d , we're going to die." M y mom says like, "Okay, Anthony, sit down, I ' m getting the ice"... my mom's calm and my dad's running around i n circles. In keeping with Anthony's comments, it seemed to me that the parents i n this study were as different from one another as the children were. Differences according to parenting role, including such family positions as step-parents and grandparents, might be an interesting site for future analysis o f this data.  I believe there is sufficient evidence in the data o f this study to suggest that, in many instances, the children wanted their parents to speak for them or to represent them within decisional contexts. The children often relied on their parents' knowledge o f their illness and also their parents' knowledge o f their unique personalities, likes and dislikes, and expected them represent these within decisional contexts. I believe Ryan's story above provides some evidence  -94-  of this, in that Ryan relied on his mother and father in this important context, trusting that his mother would accurately and passionately present what it was that he needed and wanted within the decisional context. I am not claiming that children always wanted their parents to represent them, or that they always believed their parents' representations were always accurate or fair. My claim is, rather, that parents' representations are vital considerations when we think about children's voices in health care decision-making. In this section, I have begun to relate some of the complexities in children's expressed intentions, considering some of the variance in forms of expression and in the delivery of those intentions. I have suggested that discerning the children's voices in decisional contexts was more complex than simply noting what children wanted and listening to how those views were expressed or not expressed. In the next section, I illustrate more fully how the children's intentions related to health care matters, including the expressions of those intentions were intertwined with the matters of their everyday lives and embedded in the relationships and histories that constituted the places of decision-making.  -95 -  The Embeddedness of Children's Intentions Discerning children's intentions was particularly complicated: (a) when children seem 36  unconcerned about or disinterested in the specific issue under deliberation, (b) when children's perspectives didn't hold steady, but rather developed or evolved as decisional processes unfolded, and (c) when children expressed multiple or conflicting intentions in relation to a single issue. In these instances, judgements about what constituted children's intentions were far from straightforward.  Expressions o f children's intentions and desires related to health care decisions could rarely, i f ever, be extricated from the complexities o f children's current circumstances and their lives as a whole. A s such, what might be understood as children's intentions varied in the extent to which the intention specifically addressed a particular health care issue, i n the preciseness with which the intention could be isolated, and in the apparent consistency o f one intention with other intentions a child might express. While sometimes what children wanted was simple and straightforward, often children's expressed intentions co-existed with other apparently incompatible and sometimes contradictory wishes. In this section, I focus on these complexities, illustrating how a view o f children's intentions as embedded i n everyday life, history, and A tension persists throughout this analysis of the children's participation in decisions. This is the tension between the tendency to depict children's expressions as authentic representations of their true desires and the recognition that all human expressions are, to some extent, products of the contexts in which they are created and expressed. This tension exists in the murky space where children's individual subjectivities meet with contextual opportunities and constraints. M y intention is neither to polarize children's subjectivities and the contexts of those subjectivities nor to suggest that subjectivity is solely constructed by social and historical factors. Thinking about children's participation from both angles—that of children's subjectivity (and their agency as related to that subjectivity), and that of the contextual determinants of children's expressions of intentions— provides a complex view of these activities. In this analysis, I don't endeavour to judge the extent to which children's subjectivities are reflections of human agency or products of context (or as Foucault [1984] might suggest, power relations). I do, however, believe that this agency-structure debate opens up important questions about the positioning of children within the worlds we construct for them. As I proceed in the next sections to describe various representations of children's intentions and desires, I do so knowing that judgements of authenticity are complicated, and that no particular representation of children's intentions—whether expressed by the child or the parent—can be understood outside the history and place where the child's intentions were formulated and expressed. -96-  relationship provided a foundation for a more complex understanding of the children's participation in decision-making processes. Precision, specificity, and consistency in representations of children's intentions "I don't care. Just so it doesn't hurt." This was 11-year-old Kyle's response as a research assistant sought his consent to involvement in a different research project. As in this instance, children's intentions were sometimes clearly formulated and obviously linked to specific decisions; children's intentions appeared pre-formulated, ready to be offered into places of decision-making. In many instances of decision-making, however, what a child wanted was not particularly clear, and vagueness and ambiguity characterized the child's expressed views. The question that confronted me in these instances was what, if anything, could reasonably be concluded to be the child's expressed intention? Even in instances such as Kyle's expression above, where what the child wanted seemed clear and unambiguous, certain questions arose. These questions had to do with what it was that the expressed intention actually represented, and the extent to which the expression actually addressed the problem at hand. Striking variation existed in the degree of specificity and precision of children's expressed intentions. And, regardless of the specificity and precision ascribed to the expressed intention, questions of consistency with the child's true intentions persisted.  Earlier, I described 10-year-old Alexandra's fear of needles. When decisions related to surgery, dental appointments or flu shots were made; her position (already formulated long before any particular decision became a relevant concern) tended to be clearly presented. She did not want dental work, and she did not want flu shots; where a needle was involved, her intentions were clear and unambiguous. What she wanted was precise and specific: no needles of any kind. However, while Alexandra came to decisions where injections were involved with clear intentions, on a broader look across the data, this apparent clarity tended to be the exception - 9 7 -  rather than the rule. And, in Alexandra's story, as I will show later, her unwavering protest against needles was met at times with other apparently contradictory expressions.  Some of the most imprecise expressions of children's intentions became apparent in the children's spontaneous behaviours. In the following excerpt, 11-year-old Lucas' mother described events that occurred as he arrived home after his regular hemodialysis appointment. Lucas knew that he needed to begin his gastrostomy feed as soon as he arrived home from the dialysis unit. This involved having his gastrostomy tube connected to a feeding bag and pump, limiting his mobility. When he arrived home, he raced out of the house, jumped on his bicycle and raced down the street. What is the decision in this instance? Perhaps it could be understood as whether and when to start Lucas's gastrostomy feeding. What was his intention? His intentions in this instance could be interpreted in several ways: perhaps he wanted freedom, privacy, exercise, or entertainment. Lucas's mother did not provide her interpretation of his intentions. In her words, "I just let him ride his bike for half an hour or something." In many instances such as this the children's intentions were not entirely clear, and hence subject to diverse interpretations.  The children's expressions of intentions sometimes manifest as anger, rage, and rebellion, and although at times, the meanings embedded in these expressions seemed obvious; more often, they were imprecise and non-specific. Because of his worsening seizures, 11-year-old Sean was no longer allowed to go out on his bicycle alone, and definitely not without a helmet. Other things were going on in his life at the same time: his parents were sorting out a difficult separation and divorce, and he was struggling academically and socially at school. In the words of his mother, he was mad at his brother about something and maybe with me a bit... I'm wondering how much is because there is our separation going on. And then there is that he seems to be hit with his early adolescence coming on real strong too. Everything going on.  -98-  Sean's intentions and desires could be understood as embedded in his actions, words, and silence, and culminated in a particularly difficult episode for Sean and his mother: He's standing on the roof and he's got two bricks i n his—oh, he's got something he's pretending is a sword and he raced into the kitchen and peeking out the door. I just closed all the drapes and ignored him. So then he climbs back up and then I look one more time and he's got two bricks and he's going to thrown them down. A s in this instance, expressions o f anger or rage seemed non-specific, not explicitly related to any particular event or decision. Yet when Sean's mother comments on "everything going on," she is speaking to the many pressures and complexities in Sean's life. These complexities, and Sean's seemingly dissociated reaction, point to the likelihood that isolating distinct kinds o f decisions, and Sean's response in relation to each, is likely not possible. Yet expressions o f anger such as these provided, I believe, important glimpses into the children's embodied subjective experiences o f their lives, and the meaning o f the events and decisions that unfolded in their everyday lives.  37  Histories and relationships within children's intentions Interviewer: So, Juan, i f I asked you to tell me about your illness, could y o u — what would you tell me? Juan:  Nothing.  Interviewer: Nothing? Juan:  I don't really pay attention to my disease.... I only pay attention to my life.  This lack of precision and specificity of children's intentions might be interpreted as a function of the nature of the data—that many of the decisions available for analysis are based on the reports of children and parents rather than direct real-time observations. I don't believe, however, that this entirely explains this observation; rather, substantial patterns within the data set suggest that the children's intentions, however vague or imprecise they might be, were rooted in children's embodied subjectivities. -99-  In this excerpt, Juan articulated an important and recurrent theme that I began to illustrate in the previous section: that the meanings o f children's experiences o f chronic illness and health care were dimensions o f children's embodied and situated subjectivity, and that children's intentions were deeply embedded i n this subjectivity. A s such, discerning children's intentions—what they wanted in particular instances—became a search for clues regarding who each child was and how the child as a person was represented in decisional processes.  Thinking about children's relationships and histories—dimensions o f the children's lives to which I had variable access—provided key clues to who the children were. In the following paragraphs, I endeavour to portray the children's wants and desires as located in their relationships and embedded in their histories, illustrating how this interpretation o f children's 38  expressions might provide a more complex approach to the discernment o f children's voices. Although there is much to be said about how the decisions themselves were shaped by history and within particular contexts, here I restrict my attention to how children's histories and their relationships shaped what the children wanted.  "What matters" as created in relation with others What mattered to the children in regard to particular issues in their lives was often intertwined with, and sometimes indistinguishable from, the intentions o f others, most often their parents, siblings, or friends. In describing what they wanted or what they were thinking, the children at times used the term we to indicate "me and my parent": "We changed to a different school," or "we wanted the afternoon class." Seven-year-old E m m a demonstrated this relational dimension o f formulating intentions when, in response to a question, she glanced toward her  38  I am using the term history here similarly to a definition provided by the New Oxford Dictionary of English (Pearsall, 1998): "the whole series of past events connected with someone or something." Events in the child's life, the life of the family, as well as community affairs, may combine to comprise historical location of a child's expressed intention. -100-  mother and commented, " I ' m lookin' at my mom's answer." Similarly, when asked about school, 9-year-old Rhys looked at his mom and said, "She knows everything." In these instance and others, the children looked to their parents as resources for knowledge about themselves and even perhaps for confirmation and clarity about what they themselves might want in certain instances. When this happened, children's authentic intentions were not easily disentangled from what their parents believed and wanted. While the precise synchrony between parents and children in these instances is not self-evident, what is important is the existence o f at least some degree o f shared meaning, and that such meaning was constituted and shared in a relational form.  In contrast, the relational nature o f children's intentions was not always manifest in a product o f shared intentions: children did not always agree with their parents and others; at times, the children held views very different from those o f their parents. Children disagreed with their parents; parents set rules for children; children and parents negotiated when topics o f diet, exercise, friends, activities, and routines emerged. Yet even in instances o f disagreement, the relational nature o f children's knowledge was evident.  T h e history of "what matters" Features o f children's experiences such as the pain, fear, and loss sometimes associated with long-term health conditions constituted, for many children, an important aspect o f their histories that became manifest i n intentions and desires. The example o f Lucas illustrates this point. Eleven-year-old Lucas was a candidate for a second renal transplant. He had a clearly expressed intention: he did not want a transplant, did not want to go on "the list," at least not at 39  the present time. Without attending to the dimensions o f history and anticipated future events, making sense o f Lucas's position was difficult. Obvious explanations such as fear o f pain or  39  Going on the transplant list means being prepared to go to the hospital at any time a kidney becomes available. "The list" refers the names and details of individuals approved for and awaiting organ transplants. -101-  surgery seemed inadequate. A t first glance, the likely benefits o f a successful transplant seemed indisputable. Lucas would no longer need dialysis three times a week, his dietary restrictions would be eased, and his attendance at school could be more regular.  Explanation for why transplant was not what Lucas wanted could be located i n part i n his chronic illness history o f renal failure, kidney transplant, and the rejection o f his first transplant. His intention could also be located in other meaningful dimensions o f his life: his friends, school, and activities. A t the time he expressed these views about transplant, the end o f the school year was approaching, and he was looking forward to his summer. Lucas wanted, for once, to enjoy his summer. To him, enjoying his summer meant having the energy to immerse i n friendships and the events o f day-to-day life—trips to the dialysis unit and all. It meant not being i l l as the result o f surgery.  Important to understanding the meaning o f this decision, and Lucas's intentions in that regard, is the fact that surgery to remove the previously transplanted kidney had taken place just a few months prior to my interview with him. A t that time, Lucas was very i l l . The experience was characterized by additional surgery, a long stay in the intensive care unit, and concerns about whether he would survive at all. N o w , after several months, i n the words o f Lucas's mother, Lucas finally felt stable: For the first time i n Lucas's life, I find he's doing—he's healthier now than he was even when he was transplanted. He's doing better now. He's growing. He's never had a growth spurt like this before ... his numbers have never been this 40  high before. So it was his decision. A month-and-a-half ago, he said, " C a n we postpone it till September, the fall? Because I want to enjoy the summer?" A n d I didn't k n o w . . .  For children with renal failure, their "numbers" are the serum electrolyte and renal function values that demonstrate the effectiveness of renal function. For children on dialysis, these numbers are also a reflection of their adherence to their prescribed diet and fluid restrictions. -102-  Beyond understanding the meaning o f surgery—potential serious debilitation—the location o f Lucas's intention was also characterized by his experiences o f hemodialysis throughout the previous few years. To Lucas, spending endless hours in the dialysis unit was not the problem others might see it to be. It was evident that there were many aspects o f his visits to the dialysis unit that he enjoyed, valued, and that held meaning for him. In particular, over time he has developed strong relationships with the nurses in the unit, the hospital teacher, and with his physician. These people were clearly important to Lucas. So while a successful transplant would mean freedom from hemodialysis, it may also hold meaning o f some separation from people who presently inhabited important places in his life. Lucas's intentions related to kidney transplant illustrate the historical locations o f his embodied subjectivity: that the meanings o f dialysis, transplants, play, and summer have roots i n past experience and anticipated events.  Past events and experiences that shaped the children's intentions were not restricted to those that took place in the child's immediate context, or even within the child's own lifetime. This is a juncture at which relational dimensions o f children's intentions intersected with the historical locations o f those intentions. The broader histories that shape families and communities could be manifest in the children's intentions. A particularly striking example existed in 11-year-old Leanne's position regarding inclusion in physical education (PE) class at school. Leanne had osteogenesis imperfecta, as did her mother. Leanne had strong views about inclusion in P E class, believing that although modifications must be made, she wanted to attend P E classes.  Although a desire to be included i n P E class seemed like a reasonable intention for any school-age child, it was apparent that Leanne's mother's childhood experiences o f exclusion contributed to the meanings o f inclusion for Leanne and her mother. Recounting her own  -103 -  childhood o f growing up with osteogenesis imperfecta, and how her experiences o f exclusion shaped her view o f her daughter's life, Leanne's mother explained, [ M y job is] making sure that she still has what she needs and doesn't feel really left out. Whereas with me, i n P E when they did basketball, I had to write a report. Y o u know, so I almost felt like I was being punished... I think in ways it's a good thing because I have been through it so I know what she's going through. In this and other instances, events o f the past had important influence on the meanings that underpinned children's intentions in health care and other decisions; history and relationships both manifest in the creation and expression o f children's intentions.  Complex meanings within children's expressed intentions A s I have already mentioned, for the children in this study, decisions related to health care were often indistinguishable from decisions related to the other dimensions o f their lives. A n d , within the multi-faceted and complex lives o f the children and their families, the meanings o f decisions could also be complex. Decisions and the possible alternatives could hold multiple, sometimes conflicting, meanings for children.  Embedded in the everyday M u c h (or perhaps most) o f what was important for children i n relation to what particular health care decisions had to do with their everyday lives. Concerns about health, illness, treatment, and procedures were intertwined with concerns about sleepovers, birthday parties, sports, school, and siblings. For these children, chronic illness experiences tended to be embedded i n their experiences o f everyday life. Consequently, what mattered most to children in health care decisions did not always concern chronic illness itself or its symptoms and treatment. A s I listened to the everydayness o f children's embodied and situated experiences o f chronic illness, I became increasingly aware that the meanings within expressed intentions related to health care decisions were often the same intentions children held in relation to other aspects o f -104-  their lives. Similarly, the meanings embedded i n intentions related to decisions about school, family life, and friends were not distinguishable from what mattered regarding their illness and health care. Sean's story provided a detailed glimpse into this embeddedness o f chronic illness experience in the everyday experience o f children.  It was my second visit to the home o f 11 -year-old Sean. Sean had epilepsy, and recently the seizures had worsened significantly, influencing his school attendance and performance, his independence, and his social relationships. In the course o f this visit I wanted to learn how Sean and his mother were managing the seizures, to discover what Sean thought about what was happening to him, and to gain some insight into the nature and extent o f Sean's contributions to the decisions that were necessarily part o f this change in his condition. Sean's expressions o f his experience and what mattered to h i m took a variety o f forms. The majority o f what I learned about his health care was not expressed as explicit and direct intentions; rather, I came to understand something o f what he wanted by being with him and through listening to his accounts of his life. i  Sean experienced his seizures i n a deeply embodied manner. W i t h words and though gestures, Sean described his seizures: It starts i n the toe and they feel all bruised... A n d it went up on both arms like that, close to the body and including the arms.... So once it would get to here [indicating his lower torso], it would start my hands too and on to my arms and once it got to the heart, the heart would start pounding like that, very hard. A n d after it's pounded hard enough, it would start going up again once it reached the... disorder. Once it reached the disorder, the epilepsy in the head, I go from this to like—fall down [falling on the floor] and have a seizure. Sean's seizures were indisputably a very physical experience for him. Shortly after Sean's very physical and intense description o f his seizures, our discussion shifted to what had happened during and after recent seizures. Sean mentioned difficult events: the pain o f needles at the  -105 -  hospital, the embarrassment o f seizuring in his classroom at school, and his worries about potential injury during grand mal seizures. In contrast to his earlier enthusiastic and animated demeanour, Sean now sat far from me, looking out the window, answering i n short sentences. A t one point, listing the last four seizures, Sean said simply, "There was an order.... classroom, classroom, gravel, medical room."  The contrast between the two patterns o f expression was made more v i v i d i n light o f an earlier conversation I had with h i m at very outset o f this encounter. For the first half hour, Sean actively engaged in discussion about something o f passionate interest to h i m : the intricate Lego™ warships he has constructed (Figure 4). Sean took control o f that discussion, and m y intermittent efforts to steer the conversation in the direction o f his health and health care were completely ignored. Again, toward the end o f that encounter with Sean, he returned to talking about topics o f great interest to him: guns and space ships, Lego™, and army men. I was impressed by Sean's willingness to discuss the difficult matter o f seizures for a short time, and wondered i f his ability to talk about something so much out o f his control as his seizures was bolstered by the opportunity to engage i n discussion about something he is very much i n control o f and that demonstrated his competence and expertise.  41  I offer this as a tentative and partial interpretation of what might have been going on in this encounter with Sean. In this, as in other encounters, I only have partial glimpses into what the children are experiencing and what they think about the matters of their health care. - 106-  Figure 4.  In great detail, Sean explained the construction and function o f this Lego ™ airship to me. 1  So what does any o f this have to do with Sean's intentions, in relation to specific decisions in his health care? His embodied experience o f seizures, his reluctance to talk about certain aspects o f his health care, his difficulties sustaining focus and attention at school, and his passion for building and creating, all provided glimpses into Sean as an individual and clues to some o f the struggles in his life. Seizures and decisions about his epilepsy held many different meanings and were intertwined with the other dimensions o f his life. So later, when Sean's mother talked about Sean's clear intention related to school attendance—that he didn't want to go and wanted to change schools—I understood better some o f the many meanings o f this intention; these meanings had to do with many aspects o f his life, including his health and health care. In this way, Sean's intentions related to school were also intentions about his health and health care.  The encounter described above occurred at a time when Sean's health condition figured prominently in his day-to-day life. In many instances, however, this distinction between the matters related to chronic illness and experiences o f everyday life was even less obvious.  -  107-  Illustrating this barely visible distinction between everyday life and the management of severe and life-threatening allergies, 12-year-old Nathan commented, "Usually, I j... I just totally forget about it." Such lack of prominence ascribed to the health condition was echoed in the words of several children in this study. Explaining what forgetting about his allergies means, Nathan went on to say Some days I just hang out with my friends and usually at a party ... I check and it's usually just on a subconscious level. [Then he added] But of course, I, I don't just totally forget about it. 42  It is evident to me that Nathan was not saying that his health condition was of no consequence to him, nor was he saying that matters related to his severe allergies didn't have important meaning for him; rather, I interpret this pattern of minimizing the impact of the health condition as a reflection of the everydayness of the experience of living with chronic illness: that symptoms of health conditions and activities related to the monitoring and treatment of those chronic health conditions were deeply embedded in the routines and events of everyday life. For these children, intentions related to their health care, and expressions of those intentions, were deeply enmeshed in the whole of their lives. Obscure meanings in children's expressions In some instances, what was most important to children—what worried or embarrassed them most—was not immediately evident in their expressed intentions. Seven-year-old Charlie had well formulated intentions in relation to the rotation of sites for his twice-daily insulin injections. This intention was expressed during a clinic visit where Charlie, his mother, his father, the clinic nurse, and his endocrinologist discussed the details of his diabetes management.  Nathan is alluding to his practice of checking labels or using other means to ensure that what he eats is safe and allergen free. - 108 -  The following excerpt from my fieldnotes depicts an interaction toward the end o f the family's appointment with the physician: Dr. H asks Charlie i f there is anything else he would like to talk about. Charlie looks at Dr. H and then begins playing with the handle o f his lunch box. "The bum hurts me too much." Dr. H ' s response indicates that he understands what Charlie means, asking, "Does it hurt more or is it just too weird?" A s the conversation proceeded, several actual or possible interrelated meanings o f injections in the buttocks emerged. This site for injection was painful. Because Charlie was a small, wiry child, and because there is so very little fat on his buttocks (or on his abdomen or legs for that matter), injections at that site could be more painful than injections in his arms. Pain and the meaning o f this pain were embedded in Charlie's statement o f intention.  Dr. H . made explicit another possible meaning regarding injections in the buttocks for Charlie in his question, "or is it just too weird?" H i s question implies that he would believe that Charlie could reasonably be embarrassed or in some way feel awkward about exposing this site. Whether or not this was true for Charlie as part o f his experience in diabetes management was impossible to confirm by the data available to me. In addition to the pain o f these injections, Charlie's sense o f his body may have contributed to the meaning o f injections i n the buttocks.  A s was the case with Charlie's desire never to have injections in his buttocks, many examples o f children's intentions were reflections o f multiple, sometimes complex meanings. In K y l e ' s story, for example, the multiple meanings o f assistance in his classroom at school became evident over various interactions. In early conversations, K y l e had mentioned how he likes the C E A (certified educational assistant) who works with h i m at school. H e mentioned that she gives him gifts, and that she helps h i m with his writing. Another time, however, he mentioned that he hates having a C E A at school. When I ask why he simple says, "I don't know." H i s mother,  i  sitting nearby, encouraged h i m saying, " Y o u can be honest with her." I asked K y l e i f his dislike -109-  of the CEA had something to do with having someone else present all the time. "Yeh," he said, without elaborating. Often, as was the case in Charlie's and Kyle's stories, I could not be confident that I understood the precise meanings of the children's expressed intentions. What seemed evident, however, was that multiple meanings of certain events or activities could co-exist, that children's sometimes-simple expressions of desires or intentions might be only partial representations of the complex meanings expressed by particular activities and decisions.  Complexities and contradictions in children's expressed intentions "I want to play soccer": Shauna provided another illustration that the meanings within children's intentions were sometimes complex and multifaceted, and that those intentions were part of a child's situated and embodied subjectivity. Although, as she expressed, 11-year-old Shauna desired to play soccer, because of her chronic condition she was not allowed to do so. In this statement and at other times, Shauna was explicit and direct about what she wanted, depicting a clear and specific desire, one that her parents claimed she had held for several years.  Taken alone, Shauna's unambiguous expression of intention is hardly surprising and can be easily understood to echo what many of the children seemed to want: to be part of the activities of the school and community, and to have an able and strong body. I suspect that Shauna was no different, and that these reasons for wanting to play soccer seem fitting intentions for an 11-year-old girl. However, in addition to these rather obvious interpretations of Shauna's expressed desire, unique elements in her story support an expanded view of what wanting to play soccer might mean to her. The sport of soccer has deep roots in the lives of Shauna and her family. Through my encounters with Shauna and her parents, I learned that her parents had immigrated to Canada  -110-  from Italy several years ago. In Italy, her father had been an avid, semi-professional soccer player. Shauna's younger siblings play soccer, and her father coaches her brother's team. While she didn't mention it to me at the time she declared her desire to play soccer, Shauna's siblings and father would soon leave for Italy and would be devoting much o f that holiday to watching important soccer games in that country. Because o f her treatments, Shauna, the oldest o f five siblings, would have to stay home. These events in the history o f Shauna's family shifted how I now interpreted Shauna's statement, "I want to play soccer," and led me to ask new questions, questions about the substance and gravity o f the embodied experience linked to that expression.  A s Shauna's story begins to illustrate, knowledge o f the children and families—what was important to them, the events and people that define their lives, their experiences o f the child's chronic illness and treatment—widens the spectrum o f possible interpretations o f a child's intentions and desires. In the case o f some o f the children, I had access to only small portions o f their stories. Other times, as with Shauna and her family, through repeated encounters I came to understand some o f the story o f the child and family and began to appreciate some o f the situated and embodied dimensions o f their expressed intentions.  Shifting meanings o f everyday decisions According to her own account and that o f her parents, 11-year-old Jenna adhered closely to her prescribed diet for diabetes; however, in certain instances, such as parties, restrictions on carbohydrate intake had more significance than i n her usual day-to-day life. A t those times, Jenna really wanted to have some o f the cake and candy. This was particularly difficult, as these holidays and other occasions were to a large extent defined (at least for many children) by the candy and sweet food linked to them. Jenna's mother described her child's reaction to being restricted at these important times as manifested i n anger:  - Ill -  It is a lot of rage at Easter and Halloween and all those occasions when she just can't eat all the stuff at her friend's birthday parties. She gets a little piece of cake and everybody else gets a big piece of cake. And marshmallows around the camp fire and all the other kids get unlimited and she gets three marshmallows ... lots of rage and all. As this project proceeded, I came to understand some of the complexities involved in discerning what it was that children wanted in relation to particular decisions, and to appreciate the embodied and relational nature of their intentions. In my inquiry about children's participation in decision-making, I came to appreciate that mistakes might be made by assuming that one expression is an accurate and full representation of what matters to children. While it is vital that children's perspectives be elicited if participation is to occur, a complex view of these voices is necessary. My efforts to this point have been directed toward describing the intricacies of children's voices, addressing some of the many ways that the children's intentions and desires were presented and represented in places of decision-making. I have depicted how those intentions are best understood when considered in light of the relationships and contexts wherein they are expressed. As important as it is that children's own views be expressed, for children's voices to be heard, those voices must have achieved some standing in the places of decision-making. This is the focus of the remainder of this chapter.  Children's Standing in Places of Decision-making "Sometimes... [laughing] ... sometimes I don't want to hear you." These words, spoken in jest by 12-year-old Jason's mother, attest to the possibility that the children's voices could be ignored or suppressed, and suggest that certain people may have the authority to influence the standing of children's expressed views. From the outset of the study, I have held that the dynamics of participation are twofold; not only must children (or their representatives) have the -112-  ability and opportunity to express intentions and desires, but those intentions and desires must been taken seriously in decisional contexts. A s is made explicit in the questions that guided the study, I suspected that, when presented in the contexts o f decision-making, the children's views would be subjected to various evaluations, evaluations that would shape or even determine the weight granted to the children's intentions and desires. In this way, I was looking at the data through a critical eye, paying attention to manifestations o f power and authority and their influence on children's voices within decisional contexts.  It was evident that there was great variation in the standing granted to or achieved by the children's perspectives in matters related to their health care. A t various times and in various decisional processes, children were invited to express their views; other times, children apparently assumed that their views were irrelevant; while at yet other times, children actively insisted that their views be heard. In some instances, representations o f children's intentions appeared to be, without question, taken seriously, while at other times it seemed their views were rather summarily dismissed. The children's views in decisional contexts relied on much more than mere presentation or representation o f children's intentions within processes o f decisionmaking, and it is the influences on this standing that is my focus in this section.  In the following pages, I illustrate how the standing achieved by children in matters o f decision-making is determined, in part, by certain qualities ascribed to the child and the child's views. In this way, the authority structure o f decision contexts becomes clear; adults were the gate keepers to participation in decisional processes. I illustrate how this dynamic was manifest in processes o f decision-making and show how, for the children in this study, attainment o f standing in contexts o f decision-making relied on adult beliefs that the child was capable o f reasonable thought—that the expressed intentions or desires could be judges to be sound and rational within the decisional context. In order to achieve some sort o f standing in matters o f - 113 -  decision-making, the children's expressed intentions, however reasonable they might be deemed, also needed to be deemed significant i n relation to the particular decision. Taken together, the deemed reasonableness and significance o f the child's intentions and desires shaped the standing of those views within decisional contexts.  43  Meeting a Standard of Reasonableness Whether presented directly by the child, or represented in the context o f decision-making by a parent or health care professional, for what was understood as a child's intentions in relation to a particular issue to be taken seriously, it must first be deemed reasonable. Generally, for the children's views to be considered reasonable, they were measured against some standard o f maturity and good judgement.  Not surprisingly, children's views tended to be readily accepted as rational and reasonable when they were synchronous with the views o f those holding authority. Likewise, standards o f rationality posed little problem and were easily met i n the instances where children appeared to be the sole decision-makers. It was i n instances where children's intentions diverged from intentions o f the other contributors in decisional processes that judgements o f reasonableness were particularly salient, and various criteria existed against which children's sensibilities were measured. In the following sections, I describe two o f these criteria: beliefs about children's best interests, and understandings o f children's levels o f maturity.  Given what I have already claimed about the complexity of children's expressions, it is reasonable here to suggest that although a particular child's expressed view may be excluded from the decisional process, other (re)presentations of a child's wishes and desires may have influence. This is another dimension of the complexity of participation, and further evidence that participation is far from an "all or none" phenomena. -114-  Perceptions of best interests " Y o u can't play with your health": this statement by one o f the mothers o f a child with diabetes reflects her strong and sustained views about what constituted her child's best interests. In this case and others, parents and health care professionals held clear and apparently unequivocal beliefs about what constituted the child's best interests in particular decisional contexts. Other depictions o f children's interests were more subtle, yet notions o f what 44  benefited children permeated conversations about the children and their care. These notions o f children's best interests seemed to constitute powerful standards against which representations o f the children's expressed intentions were judged.  I came to understand perceptions o f children's interests as reflections o f three persistent tensions at play in decisional contexts. The first was the tension between efforts to optimize children's physical health and ensuring that children have some sort o f "normal" life. The second had to do with the tension between perspectives on what might benefit the child in the here and now and what the future child might need or want. The third tension manifested i n perspectives of benefit based on what is good for all children versus what might be good for a particular and unique child.  Maximizing physical health versus creating and sustaining a normal life Because all the children in this study had chronic physical health conditions, considerations o f their physical health were prominent themes in the data. It is therefore not surprising that beliefs about what might maximize children's health constituted an issue o f vital 4 4  In this section, I am rather bluntly portraying various perspectives on children's interests as singular criteria against which particular expressed intentions were measured; however, the process was often much more subtle. In several instances, parents and health care providers grappled with various views of a child's interests, and reflected on their own beliefs and judgements about what constituted a particular child's best interests. In this section, for the purpose of explanation, I present various understandings of children's interests without detailed attention to some of the more complex dynamics of decisional processes. I draw attention to these complexities in chapter 5, where I explore the dimensions of participatory spaces in more detail. - 115 -  interest that resonated in many descriptions o f decisional processes. M a x i m i z i n g children's physical health appeared to be, in some instances, the primary criteria o f reasonableness against which children's expressed intentions were measured.  Jenna's mother explained it this way: "There's safety and there's good control, and good control isn't a choice." For this mother, her child's physical health seemed to be held as the absolute priority. Where her child's intentions and desires might lead to compromise in physical health, these expressed intentions were likely to be dismissed. Hence, Jenna did not go to camp, she missed a school trip, and she was not allowed to have sleepovers, in spite o f her expressed desires to participate in all these activities. A s Jenna's mother described her processes o f decision-making, it seemed apparent that the potential for physical harm outweighed any arguments for the contribution o f these activities to Jenna's overall well-being. A s such, Jenna's expressed intentions to participate in these activities were deemed unreasonable.  Other parents seemed less convinced that physical health should always be held as the top-priority concern for the child, and described how they grappled with how to position health in relation to their child's overall well-being. A t one point, 7-year-old Emma's mother made the comment, "There is only so much cucumber dip one person can eat." She was illustrating her belief that, in specific instances, enforcing adherence to dietary regimens may have physical benefits in the short term, but forcing a child to eat or not eat has other consequences and that those consequences are important. The broader context o f her comment was as follow, It's hard when Emma's high yet she's hungry, so then it's giving her these 45  snacks that are l o w in carbohydrates and trying to do that. Then that's fine and she'll accept that, like cucumber dip. But there's only so much cucumber dip one  Here, Emma's mother was describing a recurrent point of decision-making in families of children with diabetes. Emma is "high"—her blood glucose levels are above what they ought to be—yet Emma's body is telling her to eat. - 116-  person can eat. I don't make it a battle because in the long run it w i l l backfire. So it is very fine line This idea that children's best interests may extend beyond ensuring what might be optimal treatment at the moment was evident in many examples provided by children and parents. Time with friends, unstructured time, experimentation with different foods, and play, were some o f the elements o f life understood to benefit children that found a place in judgements o f the reasonableness o f children's intentions and desires.  Notions that the child's best interests could only be understood by considering the child as a whole were evident i n many o f the statements by the parents in this study. This perspective was very evident in the story o f Lucas described earlier, in which the decision about the timing of transplantation was influenced by the Lucas's wish to have a summer free o f surgery and recovery. Perhaps the most dramatic example o f the tension between optimal physical health and ensuring a normal life was illustrated in the account o f one mother who, frustrated with having to wait for months for a decision about surgery for her child, debated whether to give up on the surgery and let her son "just be a k i d " : I said to the doctor, i f this surgery doesn't happen real quick, I ' m going to buy him a brand new bike and I ' m going to let him play, because he hasn't been able to ride a bike, so I ' m going to buy him a brand new bike and do whatever he wants to do for the rest o f his life. She summarized this tension as she went on: "I said [to the doctor], you have put my k i d in a bubble for five months; he's 11 years old, looking out the window and wishing he could play." This perspective on her child's overall well-being manifests in other examples, where she allowed her child to participate in sports or to push his own limits, going well beyond what might be considered reasonable by the standards o f others.  - 117 -  I noticed that even within the same transcript, parents move back and forth between a commitment to optimizing children's health and a belief that a normal life is an essential part o f a child's life, as they relate the rules, routines, and decisions that constitute their lives with their children. I have a sense that this is a persistent tension that parents grapple with as they juggle multiple, sometimes conflicting perspectives in making judgements about their children's expressed intentions.  T o d a y ' s child versus the future person A s they listened to what children might want and made judgements about children's intentions and desires i n decisional contexts, parents accounts reflected the juxtaposition o f what held that the child might need or want in the present against some notion o f a future child/person and the best interests o f that person. Often the perceptions o f future were based in worries and concerns about the adolescent years. Looking beyond adolescence, in some instances as well, parents and health care providers' perceptions o f the child's interests reflected beliefs about the adult future o f the child and what the best interests o f that adult might be.  "The adolescent thing is nearby already." The imminence o f the adolescent years was a foremost concern for many parents, including the mother o f 11 -year-old Sean. A certain sort o f foreboding about the upcoming developmental stage seemed to characterize many o f the parents' accounts. Even 8-year-old Jarrod's mother worried about this: "sometimes I think, oh god, when he's a teenager I can just see it, I can just see it, it's like the writing on the wall, I think h e ' l l kind o f rebel a bit." Shifts in body image and changes in behaviour, along with the anticipation o f diminishing parental control, were reflected i n parents' understandings o f a future child. H o w these beliefs were manifest in particular perceptions o f children's interests varied. In some instances, beliefs about the adolescent's potential (or probable) risk-taking behaviours and the loss o f parental control in those years meant that it was in the child's interests centred on -118-  establishing good health practices in these early years. A s one mother noted, " I ' m hoping she maintains her same concerns for her [health condition] when she's a teenager out with her friends as she does now." While variation from routine and occasional slips in adherence to health routines and rules seemed accepted in some families, these slips had a different meaning in other families.  Not all parents believed that the challenges o f adolescence meant that children should learn responsibility early. In one instance, a mother outlined her belief that taxing her child with too many decisions or too much responsibility in early years might result in problems in the teenage years: She's still a child. A n d I don't want her a couple o f years down the road after making all these decisions... to do that all the time by herself, I think is going to lead to burnout which often has been proved to be the case. Teenagers at a time when they really need to have good control are just burnt out and refuse to do . anything about it. When this child wanted to take on the management o f her diabetes diet and monitoring, her mother refused to relinquish control. The child's expressed intentions and desires were measured against a standard that included the perceived interests o f the future adolescent.  . Concerns for some future child extended into concern over as-yet-unknown complications o f treatments and therapies. Here, a father's worry about what his daughter might feel in the future about a treatment decision in the present was explained this way: A n d he said, " Y o u know it's going to be a lot easier for me to explain to my daughter why I didn't give her growth hormone when she comes back to me and says, "Dad, why didn't you give me growth hormone, I ' m so short," than it would be i f something went wrong and she said to me, " D a d , why did you give me growth hormone and now I ' m dealing with this complication."  -119-  These concerns about the future child and understandings o f interests associated with that child created another perspective on the reasonableness o f certain children's intentions i n regard to particular decisions.  Any child versus this child In some instances, perceptions o f best interests were very specifically linked to the knowledge that the parents or health professionals held o f a particular child. These instances were most obvious at times when what was understood as a child's best interests strayed from what would generally be considered to benefit children the most. Eleven-year-old K y l e ' s mother's beliefs about the administration o f growth hormone to her son provided one example o f this.  K y l e lived with a serious rare serious genetic condition. He was short for his age, and administration o f growth hormone may have helped h i m grow to a more usual height. Because 46  o f complications related to his condition, K y l e was also somewhat cognitively delayed, a fact that was an important consideration i n determining his best interests i n regard to the administration o f growth hormone. Without consulting K y l e , his parents eventually made the decision against growth hormone for him. While he was not directly consulted, an understanding o f who K y l e was and what he would want were represented in his parents' understanding o f his interests i n this instance. In addition to considering the problem o f daily needles for K y l e , his  For many children with a variety of conditions, decisions about the administration of growth hormone are particularly complex. None of the children in this study are candidates for growth hormone because of some endocrine deficiency. Rather, for each of these children, growth hormone has been recommended because of the child's short stature arising from other causes. Decisions about growth hormone are rendered particularly complex when a) data about the efficacy in relation to the child's particular conditions does not provide clear guidance, b) when families must pay for the medication and equipment, c) when children are very adverse to injections, and d) when support groups and health care professionals place pressure on children and families in either direction regarding this decision. - 120-  parents believed that, as a shorter person, others would expect less o f K y l e and, hence, his cognitive delay would create fewer problems for him.  In this instance, the representation o f K y l e ' s intentions and desires merges with some view o f how the world w i l l react to him. In contrast to the this example where beliefs about an child's interests were generated through consideration o f particulars o f the child's story, in other instances more general notions o f children's interests constituted standards against which children's expressed intentions and desires were measured. These situations tended to reflect discourses o f optimal health care for particular health conditions, some o f which I described above.  I have endeavoured to illustrate how notions o f the children's best interests were important standards against which children's expressed intentions were measured. Thinking about these views o f children's interests provided useful insights into the standing granted to children's voices in situations o f decision-making. What is interesting, o f course, is that in all the examples I have provided here, adults decided what constitutes children's interests. Children did not appear to be invited into these conversations.  Beliefs about children's rationality Determinations o f the reasonableness o f children's intentions and desires were not only based on the notions o f children's interests held by the various participants in decisional processes, they were also grounded in beliefs about children's capacity to formulate rational perspectives, understandings o f the extent to which children's stage o f development and their life experiences might have shaped their capacity to formulate logical and morally sound views.  4 7  47  Concepts of children's interests and children's rationality can be understood to overlap when we consider evaluations of children's expressed intentions. My goal here is not to present these as mutually exclusive categories, but rather as somewhat different points of view, varying ways of thinking about what children's expressed intention encounter in places of decision-making. -121-  Many of the attitudes and opinions parents and health care providers appealed to in judging children's reasonableness were grounded in notions of growth and development. However, as I will show later, some parents and health care providers noticed and articulated a sense that children with chronic health conditions, for whatever reason, can develop a wisdom or maturity that is not so easily explained.  Developmental maturity  "And he's able to handle a lot of situations." As in this statement, parents articulated their belief in their children, a view that at least certain children were capable of acting in reasonable ways. There were several examples such as this, where parents expressed a general confidence in the abilities of their children to make sound judgements. Similarly, parents described their growing confidence in their children's abilities to make judgements in regard to specific aspects of the child's health care, their belief that, at times of decision-making, their children were capable of formulating reasonable intentions and desires. In the excerpt below, parents described how their children had come to understand the nature of risks to their health and the potential consequences of various behaviours. Here, the mother of 10-year-old Natasha speaks about her somewhat shaky, but growing confidence in her child's ability to assess the safety of food and to protect herself against exposure to life-threatening allergens: We've always talked to her about the risks to her health—not saying that she could die from it but just saying that it's certainly important that she not eat anything with nuts in it. And I think a lot of what she's learned has been role modelled by us because we read everything that we give her. So now she knows that's what she has to do. In contrast to such a confidence in their children's abilities, other parents and health care providers explicitly described how children's lack of maturity was a vital consideration when the  - 122-  reasonableness o f children's intentions and desires was determined. One parent made this statement depicting her beliefs about the lack o f maturity o f her child and the consequences o f that immaturity on the child's ability to contribute to decisions: M y attitude is that Jenna is a child and I ' m an adult. I am responsible for her diabetes care until she is mature enough to take on the responsibility. So even though Jenna can have some say in things I feel that she has to listen to what I want her to. Explicit i n this comment is a belief that there is some threshold below which children are not capable o f making reasonable choices, at least i n regard to certain matters. While most parents and health care providers were less direct in expressing their standards for evaluation, the notion that adults had a certain responsibility in this regard was a consistent theme throughout the study.  Descriptions o f specific instances o f decision-making provided a more nuanced view o f the responsibilities parents felt as they judged their child's wishes against some notion o f the child's best interests. Depending on the risk and potential consequences o f misjudgement, these situations evolved differently. For some parents, such as those whose children had diabetes, these situations were a daily occurrence. These parents were constantly aware o f their children's diet and conscious o f the many opportunities their children had to make mistakes. Seven-year-old Emma's father articulated this process o f deliberation in the following way: It is probably bit o f a burden, a little bit o f a negative, but you become the resident expert, so that every time your child goes to a party or goes over to a friend's house for an afternoon, [you think] ..... it depends. Does the visit span dinner or lunch? Can she do a sleep-over or not? A n d you freak when you hear she had a drink o f pop or juice. She knows not to, E m m a ' s very good that way. But kids slip.  - 123 -  K i d s slip; they make mistakes. A n d often these lapses in judgement were understood as a function o f their stage o f development and moral, cognitive, or social immaturity.  48  In certain instances, beliefs about the child's maturity had to do with more than the child's chronological age. A feature o f the health condition o f some children was the tendency to be less emotionally or cognitively mature than other children their own age. For three o f the children i n this study, complications connected to their health condition meant gradual but progressive deterioration in the child's cognitive or emotional capacities. This was a particularly difficult situation for parents and health care providers. Parents o f these children described the very complicated judgements they made about their children's capacities to formulate reasonable intentions. What they had once understood as the child's capacity for reasonable judgement shifted, and previously held perspectives on the child's best interests were called into question.  A certain wisdom In certain instances, parents and other adults conceded that children might be better positioned to make wise judgements than they themselves were. One parent reflected on her own limitations in knowing what was best for her daughter in many decisions, and her belief that her child had "a certain wisdom": The other thing I really feel about this child is that there have been times when I've pushed something with her and then she has resisted ... A n d I've realized later that she had some wisdom. It was like unknowing wisdom, and she was actually making the right call for her. In conversation with this mother, the notion o f the child's "unknowing wisdom" arose i n discussion o f her child's desire to be part o f a dance group at school. A s this mother recounted the decision-making process, she described her sense that an important interest for her child was  48  A detailed analysis of parents' perspectives on the roots of children's lapses in judgement would be an interesting additional analysis of this data. Variously, these lapses were portrayed as being founded in cognitive, moral, or social immaturities. -124-  the preservation o f her child's self esteem. Because o f her daughter's lack o f skill i n this area, she worried about the possibility o f embarrassment and humiliation and the consequences o f that for her child: "I don't want to give more fodder for teasing." Yet in the end, this mother decided not to intervene and to encourage her child in her expressed desire, "to trust the wisdom o f the child and go with it."  The sense that children with chronic conditions might have a kind o f knowledge that other children don't have was echoed in the perspectives o f certain other parents. In the words o f 11-year-old Shauna's mother, "There is something different about them in their way o f thinking." What is particularly interesting is that notions that these children had a certain knowledge that other children do not have did not supplant coexisting perspectives on the child's immaturity and maturity. In both o f the examples cited here, the mothers recounted a sense that their child had a wisdom that other children may not have access to, while maintaining their concern that their children's intentions and desires might at times be reflections o f immature thinking.  Not only did some parents hold a view that their children might have a unique wisdom o f some sort, some children also held this belief. Anthony analytically portrayed his own unique wisdom as a function o f what he had to do: "I think it's because I've always had to be so careful o f not, like, falling or I think I've developed like a sixth sense almost o f everything around me and everything." In Anthony's stories, it is evident that he draws on this understanding as he argues his stance in places where he might otherwise be dismissed.  In contexts o f decision-making, for children's expressed intentions and desires to be considered relevant, they must first meet some standard o f reasonableness. This standard o f reasonableness was often shaped by notions o f children's best interests and beliefs about  - 125 -  children's rationality. In this section, I have described some o f the complexities embedded i n these judgements and hinted at the important issue o f authority i n moments o f decision-making. It is this issue o f authority in contexts o f decision-making that I address in more detail in the next section, as I portray a second important dimension o f the standing o f children's views: the significance that their voices attain within the relational contexts o f decisions.  Achieving Significance A s I have already suggested and w i l l demonstrate in more detail here, meeting some standard o f rationality did not necessarily ensure that children's intentions achieved standing in decision-making processes. Although children's views, whether represented by the children themselves or by others, might be deemed to reflect important interests and demonstrate some sort o f rational thinking, this alone did not ensure that the children's voices achieved standing in places o f decision-making. The children's intentions and desires must first be deemed significant within authority structures o f decisional processes. For children's views to matter in decisional contexts, they needed to be in some way important to those who could influence whose voices are heard and which perspectives were privileged. I suggest that, in the decisional processes into which the children in this study entered, the significance o f children's expressed views was largely determined by the multiple meanings that co-existed about decisions themselves, and by the many other voices with which children's own voices sometimes had to compete.  The many meanings within decisions Earlier i n this chapter, I highlighted the multiple and complex meanings that seemed evident within many o f the children's expressed intentions and desires. When I consider the various inhabitants o f decisional contexts, it is evident that, in many instances, multiple meanings o f particular decisions were at play as the decisional process unfolded. A s the children sought to be heard i n decisional contexts, in many instances, the meanings o f decisions differed -126-  for the various participants. These differences in meaning, combined with the relative power and authority o f those who held the different meanings, had important implications for the standing granted to children's expressed perspectives.  One family had to make a decision about the timing o f a ten-hour infusion that the child would need every day. Most children receiving this medication timed the infusion so that it would take place while the child slept at night, yet i n this case, neither the child nor the mother wanted the infusion to happen during the night hours. For the child, an intravenous infusion at night meant limitations on his movement during sleep. H i s mother was concerned about infection at the insertion site, worrying that her child's tendency to bedwetting might jeopardize the integrity o f that site. In this case, the intentions were the same, while the motivations and meaning were different. While in this instance intentions merged, more often, when the decision held different meanings for the various participants in the process, perspectives on what should be done also varied. It was in these contexts that the child's perspectives may or may not be considered relevant within processes o f deliberation.  Meanings o f particular decisions differed along various parameters, and it was within these parameters that expressions o f children's intentions found or failed to find relevance. Notions o f risk associated with various alternatives, perspectives on the health condition itself held by the various participants i n the decisional process, and the beliefs held by parents and health care providers about the children themselves, coloured decisional processes.  Perceptions of r i s k The risks associated with particular decisions were often understood differently by different persons within decisional processes. This was perhaps most obvious in those instances where children wanted to participate in certain activities and were prevented from doing so. In  - 127-  these instances, the divergences in meaning regarding decisions were particularly evident. Parents might understand their child's perspective as reasonable or not reasonable, but regardless of that evaluation, could hold some notion o f risk as a more pressing consideration. These kinds o f decisions became even more complicated when the circle o f participants i n decisional processes expanded to include health care providers, teachers, siblings, step-parents, grandparents and others. Describing one decision in which a grandparent perceived a different level o f risk to the child than she did, Lucas's mother explained Even yesterday my mom bought brownies. A n d [Lucas] wanted them so bad and, there on the label, last thing, [was the phrase] "may contain trace amounts o f peanuts and/or nuts." Sorry, you can't have them. While I don't know the grandmother's motivations in offering her grandson this food, I suspect that it would be fair to say that her sense o f risk in relation to Lucas's diet differed from that o f her daughter, and that what was most important to her (what this decision meant to her) was somewhat different from that o f both Lucas and his mother. Lucas's mother here held final authority and her beliefs about risk rendered Lucas's grandmother's desire to provide brownies to her grandson, and Lucas's desire to eat them, irrelevant.  In some instances, parents and children were prepared to accept certain risks. There are 49  many examples o f instances where parents accepted a certain amount o f risk o f physical injury i n order to allow their child to participate i n certain sports or social activities. In these instances and others, perceptions o f risk seemed to be tempered by the meanings ascribed to the decision,  This concept of risk would be an interesting site for secondary analysis and/or future research. An analysis of the concept of risk including variation of the meaning of risk for parents, children, teachers, and health care providers might provide useful insight into the dynamics of decisional processes and the relative positioning of children in those processes. Interesting work by sociologists Kelley, Mayall, and Hood (1997), as well as by nurses Lindberg and Swanberg (2006), has begun in this area.  - 128-  perhaps a weighing interests associated with ensuring physical health against interests associated with wanting the child to have some sort o f normal life.  Perceptions of ability Perhaps one the most difficult tasks the parents in this study faced was that o f defending and justifying the legitimacy o f children's intentions to teachers, other parents, and health care providers. This task seemed to be less complicated when the child had a relatively common condition such as diabetes or renal failure. The task appeared to be more daunting when the child had a more obscure condition, and especially i f that condition had few visible manifestations.  A t first glance, 11 -year-old K y l e appeared healthy, and it was not immediately apparent that he had a life-threatening and chronic health condition. In our conversation, K y l e ' s mother described many instances where she has had to justify requests for accommodations or the use o f resources intended for children and families with serious health conditions. She has had to defend their right to stay at Ronald M c D o n a l d House to other parents o f ill children, responding 50  to sceptical questions such as, "Is that k i d really sick?" A t school, she has had to argue for K y l e ' s special status in physical activities, and his need for C E A support at school. So when it came to advocating for K y l e in his expressed desire to participate in sports, she found herself in some instances defending his need to have modifications while at other times arguing for inclusion. In various contexts, K y l e ' s condition was not considered a meaningful consideration, and his mother was faced with ensuring that it became a significant consideration in contexts o f decision-making.  Ronald M c D o n a l d Charities  s u p p o r t s R o n a l d M c D o n a l d H o u s e s in several cities in C a n a d a .  h o u s e s are i n t e n d e d to be a h o m e - a w a y - f r o m - h o m e f o r f a m i l i e s o f s e r i o u s l y ill c h i l d r e n in a n e a r b y hospital.  -129-  These  b e i n g treated  Variously, it appeared children's experiences with chronic illness could either enhance their standing in places o f decision-making or hinder their efforts to be heard. In some instances, it was evident that the children were granted some authority in decisional processes because o f their knowledge and experience with their health conditions. A t other times, they were seen as less capable and competent, a person i n need o f protection rather than a person whose voice must be heard. These important distinctions may be as much a reflection o f various views o f children as they are o f views o f chronic illness.  51  Perceptions o f c h i l d r e n While views o f risk and o f children's health conditions among contributors to decisional processes were important determinants o f the relevance granted to children's intentions and desires, perhaps even more influential were the views about children in general. Perspectives on children were embedded in the comments that parents and health providers made as they described the specific children or explained the possibilities they imagined for children. Perspectives on children could also be discerned i n children's own accounts o f being in decisional places and their experiences o f relevance or dismissal. Correspondingly, the conceptualizations o f children implicit in this space tended to reflect view o f the child either as innocent and in need o f protection or as out o f control and at risk for causing harm.  52  Another direction for further analysis might be a consideration of the relative positioning of various health conditions. I have a sense that different health conditions, for example, diabetes, epilepsy, and osteogenesis imperfecta, held quite different meanings for adults when it came to matters of decisionmaking. I am curious about how, if true, this manifests in contexts such as school and organized sports. In an important contribution to our knowledge of children's moral status in various contexts, Valentine (1996) provides a historical account of how what it means to be a child has varied over space and time. Vacillation between imaginings of children as "angels" and children as "devils" has characterized modern Western history, she claims, and is manifest in the lives of contemporary children . - 130-  For most o f the children in this study, I had only brief glimpses into how they were perceived and positioned by adults. In one example, Anthony described his experience o f being considered lazy or manipulative when he requested exemption from a particular activity in P E class. H e described the orientation o f his teachers to h i m in the following way: They say, you do it or you flunk, that type o f thing. [They tell me to] do some activity that I can't do or—like I've been this close to actually just sitting down and [saying] you call my mom and I ' m not getting up until you call my mom. In contrast, he described other instances where teachers apparently considered what he had to say as meaningful and granted standing to his intentions in those contexts o f decision-making.  The many voices in places of decision-making " A n d so in terms o f the decision, it's honouring her—what she's telling us. A n d it's hard sometimes because there's a lot o f pressure." In many places o f decision-making, the significance o f children's expressed intentions diminished in the presence o f other, often very influential, voices. A s this mother suggests, children's expressed views could be countered by 53  pressures from other sources, voices against which the child's voice must compete for relevance.  The intentions o f 11-year-old Lucas i n regard to using his newly established arteriovenous fistula as an access site for hemodialysis were clear: no thanks. H i s mother 54  In order to illustrate the tensions between children's expressed intentions and other influential voices in decisional processes, and the implications of these relationships in shaping the significance of children's expressions, I am depicting these as competitional dynamics. Portraying the relationships thusly could be seen to detract from my earlier argument that the children's intentions reflected relationship and context; however, here I am illustrating particular dynamics that shaped processes of deliberation and suggest that the relative privileging of certain voices had important implications for the possibilities within decisional places. For long-term hemodialysis, an arteriovenous fistula is created. Generally this fistula consists of a surgically created connection between the main artery and vein in the forearm. At the commencement of each dialysis session, needles are inserted into the fistula, and this becomes the site of blood exchange between the patient and the dialysis machine. Prior to the establishment of the fistula, Lucas had a central line, a surgically implanted semi-permanent access to the major vein near the heart. Accessing this line for dialysis does not require needle, and the access site is well hidden. Because of potential complications, however, central lines are not intended for long-term dialysis. - 131 -  respected the meaning accessing that fistula had for her son. For Lucas, the risks associated with use o f a central venous line did not offset the pain associated with the insertion o f a needle into his fistula. H i s mother understood that he was unhappy with the changes to his body that resulted from the creation o f the fistula, and she fully appreciated that these meanings were manifest in her son's refusal to allow his fistula to be used for hemodialysis. In this way, Lucas's mother acknowledged that his views regarding dialysis could be understood as reasonable. Yet, in a decisional place dominated by voices o f "best medical practice" and '"standards o f care," little significance was granted to Lucas's expressed intentions. Standards o f treatment for children undergoing hemodialysis, statistics o f infection risk associated with each, and established routines and patterns o f practice in the location where hemodialysis took place, represent voices that held more authority Lucas's concerns about pain, and his own sense o f his body.  In some instances, the intentions o f other family members or the family overall could be understood to compete with the child's own views. The tensions parents experienced as they attended to the differing needs o f various members o f their families were echoed in many o f their accounts o f decision-making with and for their chronically i l l children. Depicting this tension as she judged what weight to grant to her child's expressed wish to participate in a particular activity that would require a great deal o f her time and energy, the mother o f 9-year-old Rhys commented, If it was just Rhys then, like I said, it wouldn't be too bad... I could just focus all my time and energy and not worry about too much. Whereas, you know, I have a completely opposite c h i l d . . . he's into every sport that possibly could be out there... and he's always wanting my attention, more so now than ever.  - 132-  Rhys's expressed intentions and desires entered a place o f decision-making where the voice o f his brother and the concerns o f the entire family constituted other important interests.  55  The voices within places o f decision-making could be linked to the embodied subjectivities o f the inhabitants o f those places; to the histories, relationships, and locations that compose decisional places; and to the influences from outside those places that are manifest i n the decisional dynamics as they unfold. Varying forms o f discourse found expression i n the decisional processes. A m o n g these were expressions reflecting prevailing beliefs about optimal health care and what that might be i n the lives o f particular children. Describing the impact o f accepted views regarding the appropriateness o f providing a particular medication for her child's condition into the decision not to require her child to take that medication, J i l l commented, " A n d so when you talk to other parents, they're like, what do you mean she's not on [the specific medication]? A n d they think it's a w f u l . . . " While parents varied in the extent to which prevailing views o f the right thing to do affected their decisions, awareness o f these larger discourses also permeated their decision-making. In similar ways, discourses o f what constitutes good parenting, and matters o f safety, found voice i n particular places o f decision-making. These voices influenced, in varying ways and to differing degrees, the standing o f children's expressed intentions. In these places where multiple voices converge, adults inhabiting the space o f deliberation demonstrated varying degrees o f uncertainty about what it was that the child might want, need or desire, or varying degrees o f certainty about what the best course o f action might be.  An important distinction must be made here between the status of children themselves in decisional places and the standing granted to specific expressed intentions. These are, of course, interrelated. Here I am not suggesting that Rhys's status as a person in this decisional place has been diminished. Rather, I am illustrating that the standing of his expressed intention was influenced by other important voices in that decisional context. -133-  Summary M y intent i n this chapter was to depict some o f the complexities inherent in efforts to discern chronically i l l children's voices i n matters o f decision-making and to highlight aspects o f decisional contexts that shaped the standing o f the children's voices in places o f health care decision-making. The children's voices assumed many forms, and the task of judging what constituted a particular child's voice in specific instances was often difficult. What I have come to understand from my encounters with the children and their families i n this study is that children's intentions and desires have a location in the children's histories and in the relationships wherein those views are expressed. Furthermore, children's intentions can be complex in their meanings. Children, like adults, juggle multiple and competing desires and intentions, some o f which may at time appear conflicting or contradictory.  The standing achieved by children as their intentions are presented into decisional contexts is another complex matter. In this chapter, I have depicted dimensions o f the standing o f the children by suggesting that for children to achieve standing, their views must meet some standard o f reasonableness and be considered relevant in the contexts o f decision-making.  In chapter five, I continue describing the findings o f this project, casting children's participation as a relational dynamic that was shaped in particular contexts, contexts that were determined, at least i n part, by the resonance and relevance o f the children's voices. Specifically, I describe how the resonance o f children's voices could be understood to intersect with the deemed relevance o f children's voices within moral or social spaces and suggest that it was in these spaces o f human experience where possibilities for children's contributions to decisions were created or dissolved.  -134-  CHAPTER 5 PARTICIPATORY SPACE AS A REALM OF VOICE AND STANDING  Introduction A s this project proceeded, and as the complexities within the data multiplied, I became increasingly aware that neither what constituted the children's voices in places o f decisionmaking nor what might be judged as children's participation in those decisions could be reasonably comprehended without careful consideration o f the social realms wherein those decisions unfolded. The children's expressed views and the standing o f those views intertwined with the relationships, histories, and structures that constituted the places o f decision-making. Depicting some o f these complexities was the project o f chapter four. In that chapter, I proposed that the nature and quality o f children's expressed intentions (i.e., the resonance o f children's voices) and the standing achieved by those voices in places o f decision-making (i.e., the achieved relevance o f their views) were vital determinants o f children's participation i n health care decision-making.  In this chapter, I take up these notions o f children's voices and attend more carefully to the social or moral spaces where decisions unfolded and where children's agency was enacted. In this chapter, I look into these participatory spaces; 1 describe how possibilities for and 56  constraints upon children's contribution to health care decisions both shaped and were shaped within these realms, where agency and structure intermingle. M y concern in this analysis has to do with the intricacies o f these participatory spaces: what created opportunities for the children and their parents; what suppressed their voices; what gave structure to these spaces; and, most  I am using the term participatory spaces to describe the moral and social realms wherein children's contributions to decisions unfold. The concept of participatory space is one lens through which to interpret these complex locations of decision-making. - 135 -  importantly, what shaped possibilities for the children's contributions to the important matters o f their lives.  A View of Children's Participation Before I proceed to depict children's participation as located in certain social or moral spaces, I w i l l summarize what I have come to understand about the children's participation i n decision-making. To begin, what the children intended and desired was sometimes obvious, other times more obscure. Importantly, their intentions i n regard to health care matters were generally not easily distinguished from their concerns about their everyday lives: their experiences o f health and health care were embedded i n their every day existences. Further, while the children's intentions varied i n the specificity with which a particular expression might address the decision at hand, i n the degree o f precision as to exactly what it was that a specific child wanted, and i n consistency over time and across situations, these intentions were nonetheless deeply embedded i n the children's relationships and their histories. Children's participation was the process whereby children's relationally formulated intentions and desires were made accessible to, and achieved standing within, decisional processes.  Given this perspective on children's participation, I use the terms resonance and relevance i n the following ways (see Table 5 ) . Resonance refers to the child's abilities and opportunities to formulate intentions, and to make those intentions available to and accessible within decisional processes. In one sense, resonance emanates from the child; it is some reflection o f the child's embodied subjectivity. Relevance has more to do with features external to the child. It refers to the extent to which children's intentions and desires gain standing, the extent to which their views are deemed both reasonable and important by those i n authority within decisional contexts. Power and authority are central considerations i n this notion o f  -136-  relevance, where questions such as " W h o gets to speak?" "Whose voice counts?" and " W h o gets to decide?" gain importance.  Table 5 Dimensions of Children's Participation and Key Influences on Each  Dimension of Children's Participation  Key Influences  Resonance o f children's voices  Children's own abilities to formulate and express views The nature and quality o f the relational context Availability o f representatives  Relevance o f children's voices  Adult claims to authority (beliefs about children's interests, protection and maturity) Children's capacities to advocate for themselves Adult orientations toward children Existence and strength o f competing voices  Spaces of Children's Participation Participation then, can be understood as an activity deeply embedded in relationship and history, and having to do with children's opportunities and abilities as well as with constraints imposed upon them; my task i n this project was not just to describe those complexities but also to interpret them in a way that might assist health care providers as they encounter chronically i l l children in their practices. Given these premises, I found it necessary to think further about how the contexts o f decision-making might differ from situation to situation, what variations i n the resonance and relevance o f children's voices might manifest in particular situations, and what features o f the decisional contexts are fixed and what might be alterable.  Although some existing theoretical approaches to children's participation in decisionmaking attend to aspects o f both agency and structure (Hart, 1992; Thomas, 2000), none that I -137-  encountered seemed to fully address some o f the more complex questions this analysis was uncovering. For example, as I considered the resonance and relevance o f children's voices in various decisional processes, it was not at all clear to me how one might discern what a child's optimal participation would be. H o w much resonance is a good thing? Should parents and health care providers always seek to foster children's involvement in decisions? H o w can we reasonably think about representations o f children's intentions by others? H o w these questions are answered has important implications for the lives o f chronically ill children, yet doing so demands simultaneous attention to structure and agency or, as I am suggesting, to the resonance and the relevance o f children's voices.  The work o f scholars in the field o f critical human geography (e.g., Aitken, 2001; Gallager, 2006; Valentine, 1999; Valentine, Butler, & Skelton, 2001) have provided some guidance to my analysis in this project, particularly through analyses o f children's social and moral spaces. Most o f these authors draw, in one way or another, on the works o f Lefebvre and Foucault to describe the complexities and dynamics o f spaces o f human existence. A s a construct, 'space' becomes much more than some sort o f void to be filled; it is shaped by power and human activity, and hence it is neither solely a product o f structure nor a consequence o f human agency. In his classic work, The Production of Space (1991), Lefebvre depicts social space as something more than a vast emptiness waiting for events to unfold:  (Social) space is not a thing among other things, nor a product among other products: rather, it subsumes things produced, and encompasses their interrelationships in their coexistence and simultaneity—their (relative) order and/or (relative) disorder. It is the outcome o f a sequence and set o f operations, and thus cannot be reduced to the rank o f a simple object. A t the same time there is nothing imagined, unreal or "ideal" about it. (p. 73, parentheses in original) In his philosophical analysis o f social space, Lefebvre suggests that, at its most basic level, space must exist for an individual or group to be seen and recognized. He asserts that "groups, classes - 138 -  or fractions o f classes cannot constitute themselves, or recognize one another, as "subjects" unless they generate a space" (p. 416). While Lefebvre suggests that individuals can and do produce space, Foucault's writing (1973, 1977) suggests a different view: that space produces certain sorts o f subjects. This is a tension that I try to keep alive i n my depiction o f participatory spaces; thus, both these views are helpful i n my analysis o f children's participation in decisionmaking.  Other authors have also built on the concept o f social space, addressing ethical and moral dimensions within these realms o f human existence. In their exploration o f the links between ethics and world politics, Campbell and Shapiro (1999) approach moral spaces as "the bounded locations whose inhabitants acquire the privileges deriving from practices o f ethical inclusion" (p. ix). Walker (2003) depicts moral spaces as sites o f reflection and action, openings in which ethical concerns can be seen and named, and where dialogue about these concerns can be initiated and sustained.  In this analysis, I am peering into the moral spaces o f children's existences toward the goal o f understanding some o f the complexities o f their participation in important matters o f their lives. I begin to use the term participatory space i n terms o f the social relations that shape possibility and opportunity for children's contributions. In one sense, space is an abstract field " i n which are mapped trajectories o f history, political economy, technology, and social relations in on-going dynamics" (Kelly, 2003, p. 2280). The concept o f space, when understood as constructed from the multiplicity o f social relations and the interplay o f them, creates a way o f thinking i n terms o f "the ever-shifting geometry o f social/power relations" (Massey, 1994 quoted in K e l l y , 2003, p. 2280). In this analysis, then, participatory space can be understood as a dynamic field o f power on which are mapped elements o f health, health care, policy, children's bodies, and adult-child relations. Participatory is space is the dynamic field o f power where -139-  children seek to make their voices heard, and where those voices sometimes struggle for relevance.  In one sense, I am peering though the layers o f human dynamics and social relations: through the broad social and moral world o f children's and parent's everyday existence, into the spaces where decisions o f various sorts unfold, and then, into the more narrow field o f social relations that might be understood as the location o f children's participation. In the analysis that follows, I begin to look at the participatory spaces i n decisions with and for school-age, chronically ill children. In order to accomplish this, the following lines o f inquiry informed my analysis o f the data:  •  What characterizes adult-child relations i n this instance? Who owns the space o f decision-making?  •  What does the child want? H o w is that view expressed? What does or would constitute participation?  •  What is the nature o f the child's own social action?  •  H o w do the structures expand or limit children's alternatives? Who controls the spaces where decisions unfold?  The answers to these questions speak to, in part, the resonance o f children's voices and the relevance o f those voices i n decisional contexts.  Participatory Spaces in Chronic Illness Decision-Making A s I attended to variations in the resonance o f the children's voices and what I perceived as the achieved relevance o f those voices, certain patterns characterizing the social dynamics o f decisional processes became evident. Broadly speaking, the moral spaces where decisional processes unfolded and where children's participation was enacted could be understood to be characterized by one o f four dominant features: children's silence, children's tangible -140-  contribution, adult imposed authority, or adult assumed responsibility. Figure 5 depicts these variations within the moral spaces where decisional processes unfolded and where participation was enacted.  Children's voices resonate  Children's views irrelevant  Children's voices muted Figure 5.  Participatory spaces in relation to the resonance and the relevance o f children's voices  The resonance o f children's voices, represented on the vertical axis, is a continuum depicting the extent to which the children's intentions and desires were available and accessible i n decisional processes: made available through representations o f the children's intentions, and accessible to other inhabiting that space (usually adults: parents, teachers, or health care providers). A s I described in chapter four, what might be judged as children's expressed views varied along several parameters, including the manner o f representation, the precision o f the child's expression, and the specificity with which expressions were linked to the problem under consideration.  - 141 -  The horizontal axis in Figure 5 represents the extent to which the children's views were taken into account within i n the power dynamics o f the decisional process: the relevance that children's expressed wishes and desires achieved within decisional contexts. A s I portrayed in chapter four, the standing achieved by the children's expressed views in contexts o f decisionmaking constituted a vital dimension o f children's participation, influenced by adult authority and children's agency in places o f decision-making.  Although I am portraying the resonance and relevance o f children's voices as separate axes, they are not independent concepts. It is the differences that I am pulling apart in these axes: emphasizing, on one hand, the clarity and authenticity o f children's expressions as the resonance of children's voices, and, on the other hand, the standing o f those views as the relevance o f children's voices. O f course, I don't have to go far down any analytical path to realize that dimensions o f power are manifest in what can be expressed (by whom in what context), and what is heard (by whom and in what context), and are intricately intertwined with any understanding o f both the resonance and relevance o f children's voices.  Before I go on, I want to qualify the interpretation I present i n the following sections in two ways. First, while my efforts i n this chapter are devoted to depicting some o f the variations in the participatory spaces, I want to emphasize that my goal i n doing so is not to propose a comprehensive explanation o f children's participation in chronic illness decision-making, but rather to provide a framework, a model, that might assist practitioners in making sense o f this complex domain o f human activity. M y intent is to support sustained attention to patterns and variations i n decisional processes and children's participation, rendering visible some o f the morally relevant aspects o f activities related to decisions in children's health care.  - 142 -  Secondly, in order to depict patterns and variations within the spaces o f children's participation convincingly, it is essential that I make some judgements about the degree o f resonance o f children's voices and the extent to which their voices achieve relevance i n decisional processes. For reasons outlined i n chapter four, these kinds o f judgements must be undertaken with caution. I therefore reiterate that all my interpretations are partial, that they must be understood to be grounded within what was available to me as a researcher-observer in certain instances. I hold my interpretations not as the "truth" o f children's participation i n these cases, but rather as illustrations o f the kinds o f contexts and dynamics that could reasonably be believed to unfold in certain moments o f decision-making.  A Space of Children's Silence Instances o f decision-making exist i n the data where little or nothing could be heard o f particular children's intentions and desires, and where the voices o f individual children were seemingly irrelevant in decisional contexts—at least in the view o f the adults holding authority. These instances existed in social or moral spaces characterized by children's silence. Silence 57  characterized spaces o f decision-making when something or someone within the context or the relationships rendered the individual child invisible—the child's voice was not heard; his or her intentions and desires were unavailable, unsolicited, or unnoticed. In these places, children might try to speak, but they went unnoticed. Alternatively, silence characterized the space because a child or the child's representative was absent from the decisional process, or for some reason incapacitated in their ability to formulate and express intentions and desires.  I debated whether to use the term "children's silence" or "children's absence" to describe this space of decision-making or participation. I am using the term silence here in a very different way than when I used the word in chapter four to depict silence as a means of expression. The paradox between these two usages of the word is not unnoticed, but I believe the word is, for now, the best available term to describe instances where children's voices are muted and their status questionable. - 143 -  Two categories o f decisional processes became evident when I considered the conditions under which certain children were silent within the decisional processes that shaped their lives. First were those instances where children were physically present as decisions unfolded but were somehow rendered invisible. The second were a group o f decisions that had profound affect on the children's lives, in which children often had little input. These are decisions about the structure and organization o f services to school-age children, including health care, education, and social services. These two categories o f decisions are not mutually exclusive, but I address them separately here.  Present but invisible: The paradox within a space of children's silence The fieldnote excerpt I have included here is longer than usual; I include it i n order to reveal some o f the complexities o f an encounter I observed and to illustrate certain dimensions o f authority and agency that might manifest i n a space characterized by children's silence. This excerpt picks up at a point where 12-year-old Ethan was lying i n bed, receiving an infusion that would be ongoing for the next several hours. He watched television in the darkened room as his mother and father sat side-by-side i n chairs at his bedside. A physician from a specialty service was about to enter Ethan's room. Although this family was aware o f and had had previous contact with other physicians i n the specialty service, this particular physician was new to them. A doctor enters the room and stands at the foot o f the bed, speaking across Ethan to his parents. She does not greet or speak to Ethan. Ethan does not look at her. For fifteen minutes the physician asks a continual stream o f questions about diet, weight and height, psycho educational testing, marks at school, blood results, history o f fractures over the past months, and medications. The physician writes notes as Ethan's mother and father endeavour to answer the questions posed. Ethan's mother speaks clearly and eloquently, obviously understanding what the physician is asking and providing the answers to the questions. Occasionally she consults her notebook for details. Throughout, the physician does not acknowledge Ethan. Ethan neither looks at nor speaks to the physician. He keeps his eyes on the T V .  - 144-  Questioning complete, the physician proceeds to examine Ethan. Ethan places his right arm across his eyes. The physician squeezes his ankles and arms, lifts his shirt, palpates his abdomen and percusses his liver. While being examined, Ethan lies motionless, saying nothing. A nurse in the room has been monitoring Ethan's I V and prepares to take Ethan's blood pressure. Ethan's mother takes Ethan's arm away from his face and straightens it so that the blood pressure monitor w i l l function properly. So, Ethan's blood pressure is taken as Ethan stares at the T V , his mother holding his arm straight, and the physician palpating his abdomen. N o one says anything directly to Ethan. Examination complete and blood pressure taken, the physician asks Ethan's mother and father i f they have any questions. Ethan's mother asks i f she can have a copy o f this physician's report. The physician comments that they should be receiving a small piece o f paper each time after Ethan's admission. Ethan's mother comments that occasionally they get a piece o f paper with numbers, but it is difficult to understand what the numbers mean, and the numbers don't address conversations about how Ethan is doing or future plans for his care. M o m points out that they need something to refer to as they try to understand the changes i n Ethan's condition, and to use as a basis for reporting to other physicians i n their home community. She repeats her request for a copy o f the records. The physician once again mentions that the lab results should be mailed to them after each admission. Again, M o m reiterates that they generally receive those records, and emphasizes that those records do not provided a comprehensive account o f what every physician has said. Dad mentions that it would be helpful for them to be able to see the records and to understand how things change from admission to admission for Ethan. A g a i n the physician mentions that the numbers should be available to them. M o m comments that they need more than the numbers. "What kind o f report db you want?" the physician asks. M o m provides an example. "Today I saw [name] for [reason] and these are my impressions." The physician is clearly reluctant to commit to providing a full report to this family. A t one point she says, "I don't know what we usually do about giving this information to families." Once again, Ethan's mother and father repeat why this information is so important to them and why they need it. After the physician leaves the room, Ethan's father and mother looked at me and his mother comments, "This is what we always have to deal with." To some extent, Ethan is both present and absent within this story. Information was being gathered that would provide the foundation for decisions about aspects o f his health care, -145-  including medication dosages, diet recommendations, and long-term plans for care. The process of decision-making was somewhat vague: the problems were never named, alternatives never made explicit, and the parents were unclear about who it was that would make these decisions and how the decisions would be made. I think it is reasonable to surmise that, i n this instance, Ethan's voice was largely muted, and that, while Ethan's parents were struggling to represent him, they did so without particular success. Based on the physician's actions and words in this encounter with Ethan and his parents, it seemed apparent that, at least in part, Ethan was no particular child in the sights o f this physician.  58  Authority in this instance rested largely in the domain o f the physician. I surmise that the physician, as the expert in one aspect o f the care o f this child with complex and chronic illness, understood her responsibility to be that o f collecting necessary information and, on the basis o f her expertise, contributing to judgements about the best approach to care for Ethan. What the physician wanted to know in this instance appeared guided by some framework in the physician's mind. This framework seemed to render invisible the particular intentions and desires o f Ethan or his family.  While Ethan's parents struggled to be heard—to claim some authority based on their position in relation to Ethan and their responsibilities for his care—this authority was neither readily granted nor easily achieved. A s his parents struggled for voice, and as Ethan remained silent, Ethan's voice was muted and his standing i n the place o f decision-making compromised.  I am making this claim knowing that this is but one interpretation of what happened here. In chapter 4,1 emphasized the historical and relational dimensions of participation, and the suggested that it is possible to make errors in judgement when we base our assumptions regarding children's participation on the basis of a single encounter. What I take from this illustration, however, is the possibility of children's silence, an absence within a decisional process. For example, while I have interpreted Ethan's behaviour as indifference or acquiescence, he may have been conveying a sort of passive resistance, a possibility I might have been able to discern more clearly if 1 had known Ethan better and if I understood more of his patterns of communication and relationship. - 146 -  It seems evident that the gatekeeper to more active engagement was the physician. This space appeared controlled by adults, and Ethan had little place in it.  In some ways, this story o f Ethan is an exception in the data set. Very few o f the encounters between adults and children could be interpreted appeared to render children's voices silent. Even in the story o f Ethan, my suggestion that he was largely silent i n the space o f 59  decision-making is based on an analysis o f a relatively brief interaction and partial knowledge o f what was going on i n this particular encounter. I presented this story, however, as an illustration of the possibility that children could be absent from decisional processes, even while physically present, and even as their parents endeavoured to represent them.  What is important about Ethan's story is that the struggle for voice by children and their parents can be very real. In this instance, as the parents' voices became more muted and their efforts to represent their child's intentions and desires were dismissed, the opportunity for their child's participation diminished correspondingly. Many parents recalled instances when they believed that, in their efforts to represent their child's voice, they were also silenced. One mother articulated her frustration in not being heard by health care providers, and her beliefs about what that meant for her son, as follows: A n d a lot o f times you find that they don't listen to what you have to say and I think that moms or dads that have kids that have chronic illnesses, like we've dealt with that since day one so we know really what's best for that child. I mean maybe I haven't got a big degree behind my name or anything but you know for  Again, participation in this study raised the awareness amongst children, parents, and health care professionals of the issue of children's voice. And, because of the nature of the study, potential participants who had reservations about the inclusion of children in decisional processes did not likely participate, while those who did participate may have been sensitized to what it might mean to listen to children. That said, a less-plausible but possible explanation of the composition of the participants of this study would hold that some parents who don't believe in including children might volunteer so that their views be heard and, similarly, that some of those who already try to maximize children's input may not feel the need to be heard. While my sense is that the former is the better explanation, I acknowledge that the second explanation remains possible. - 147-  that particular child and maybe not for the next child that has [this particular chronic illness]. In my master's thesis project investigating moral dimensions of the nursing care of critically ill children (McPherson, 1999), I found that critically ill children could be rendered invisible by nurses, even when the nurses actively attempted to sustain a perspective of children as fully human beings. When there were few reminders of who the child was, when parents were absent, and when there were multiple, competing pressures in the work of the health care providers, perceptions of children as fully human beings could become threatened. In Ethan's 60  case, I suspect that a number of factors muted his voice and rendered his views irrelevant: factors that might be related to the physician's perspective on the child; to the physician's understanding of her responsibilities to Ethan, his parents, and the health care team; or to the socio-cultural positioning of Ethan and his family and their corresponding credibility in the eyes of the physician. "Generic" children in policy and practice Policy decisions at various levels had important implications in the health care of all of the children in this study, yet, because of the levels and kinds of decisions, individual children tended to have little or no influence on these decisions. Diverse policies such as those shaping access to health care, availability and cost of certain medications or treatments, and inclusion at school, profoundly influenced the children's lives. For the children in this study, policy manifested in the children's everyday lives in often subtle ways, shaping diverse structural aspects of their lives: matters such as how far children and families had to travel to access services, what was important when it came to children's assent or consent to treatment and  In that study, I described tendencies toward the objectification of children when they were very ill, and highlighted the dominant discourses of attention to the physical body and of ensuring efficient function of the critical care unit as important competing interests. -  148-  surgery, what constituted accepted practices in relation to pain management, and how children and parents accessed information about children's treatment and care. The relevance of these structural features of decision-making to this analysis of children's participation in health care decision-making may not be self-evident. What I want to illustrate here is that the policies that created and shaped the structures and practices that were enacted in the children's lives tended to be generated with some objectified notion of children in mind. Hence, in many instances, the resulting practices and structures created conditions where the needs, intentions, and desires of particular children were neither elicited nor heard. Here I draw attention to two groups of these political sorts of decisions: decisions determining the costs of treatment for certain children, and decisions about children's access to resources at school.  The availability and cost of treatment The availability and cost of various medications or treatments for the children and their families in this study raised questions for me about why it was that certain families were able to access resources more readily than others, and why some health conditions seemed to warrant more resources than others. It was strikingly apparent that, for the families in this study, the financial cost of a child's chronic illness could be substantial;—in some instances it was devastating. Often these financial concerns were directly related to policies about the distribution of resources at the federal, provincial, or health authority level.  Describing the cost of her son's treatment—both the direct costs of treatment and the less visible cost created by her inability to work—9-year-old Rhys's mother said: I don't care if I live in a cardboard box. My main focus is on [Rhys] and that's all I have time to care about right now—and my other son. I threw a fit when they wouldn't give us medical coverage and we weren't able to afford his prescriptions. There was nothing we could do.  - 149-  Rhys was a candidate for a new medication that might help control his seizures, a medication that would cost the family approximately $900.00 per month. Having moved from their home to an area where housing was less expensive, now living apart from her husband because his place of employment was located 270 kilometres away in their original community, and having given up her own job to care for her child, Rhys's mother summed up the financial challenges by saying, "Come on. H o w do you eat, how do you pay your bills and any mortgage and buy $900.00 worth o f medication a month? ... I ' m going to have to get some sort o f a part-time job to be able to afford to have the medication."  In this instance and others, decisions about whether to provide certain medications to children were based, at least i n part, on the family's ability to pay, shaping the opportunities that might exist in the moral spaces o f decision-making. The relevance o f Rhys's intentions diminished as another very poignant competing voice came into play: cost. A s they were for 61  Rhys, prescription medications constituted an important aspect o f therapy for most o f the children in this study. Where treatment took place i n hospital settings, medications were generally funded by the provincial Medical Services Plan ( M S P ) . Outside o f the hospital, however, parents were almost always responsible for the cost o f their children's medications, whether purchased out o f the family budget or subsidized, as was the case for many, through  For chronically ill children in British Columbia, the funding for medications and treatment is somewhat convoluted. The provincial Medical Services Plan (MSP) provides basic health care (which does not cover medications) to all residents. British Columbia's MSP is available to all residents of BC who meet eligibility requirements. Monthly premiums are $108.00 C D N for a family of three or more (Government of British Columbia Ministry of Health, 2006a). For many of the families in this study, the premiums were paid by a parent's employer. Because they were residents of British Columbia, the children in this study were entitled to access to physicians, medical specialists, and, when available through a hospital-based program, other services including psychology, physiotherapy, and speech therapy. Outside of hospital programs, services such as physiotherapy, speech therapy, occupational therapy, and counselling were generally not funded by MSP; the cost of these services tended to be borne by the families. The exceptions to this were those children who qualified for these therapies through programs jointly funded by local school districts and the B C Ministry of Children and Family Development. -150-  extended health benefits provided by a parent's employer. Rhys's family was not alone in 62  facing daunting medication or equipment costs. The parents o f another child in this study, for example, described spending $600.00 per month on insulin supplies. Another mother, 63  describing the decision about whether or not to provide a certain medication for her son, made this statement: So it's licensed to be used i n Canada, but the B . C . government and many provinces in Canada don't pay for it. A n d [the medication] costs, when you start off, a small dose, maybe 15 grand a year, and it goes up to 30 grand once you get cooking with the full dose. We have no extended healthcare, so that cost would be borne by our family. Interestingly, medications for certain children were reimbursed through specific plans, and most were at least partially covered once a certain deductible had been met. For example, medications for children with chronic renal failure were fully covered through a provincial organ transplant program. A s well, children who qualified for the " A t H o m e " program, a provincial program for parents o f children with severe disabilities, had all approved medications fully reimbursed through the provincial Pharmacare program. So, while some families faced 64  devastating medication costs, for other children, medications were provided for little or no cost. Children with certain chronic health conditions, such as children with diabetes and those with organ transplants, had their medication funded through provincially mandated programs. A s I In 2003, the British Columbia government introduced Fair Pharmacare Coverage to assist families with lower incomes (Government of British Columbia Ministry of Health, 2006b). With this plan, families have a certain deductible to meet (0-3% of net income) before Pharmacare begins to pay a significant portion (70%) of drug costs. Once a family maximum is reached (2-4% of net income), 100% of prescription drug costs are covered. Rhys's family met the criteria for Fair Pharmacare support; however, the medication that Rhys needed, while approved for use in Canada, was not considered an eligible benefit within the Pharmacare program. While the cost of insulin was covered through a provincial program, certain equipment such as syringes and blood glucose testing supplies were not. The "At Home" program is administered by the British Columbia Ministry of Children and Family Development, and is intended to assist families with the extraordinary costs of caring for severely disabled children at home. The benefits provided include respite benefits, and a range of medical benefits (Ministry of Children and Family Development, 2006). Three of the children in this study qualified for this program. - 151 -  recorded earlier, as a result o f the cost o f their children's medications, some families had to make difficult choices. When we consider the spaces o f children's participation, these economic and social influences become important. Quite outside any particularly decisional context, opportunities for children and their parents (as well as siblings and sometimes grandparents) were sometimes greatly influenced by decisions into which they had no input. Costs o f medication, which medications and therapies are included i n various programs, the availability o f services: these elements all shaped where participation might even exist.  It is worth noting here that a large number o f the children in this study had rare health conditions. Because o f the low incidence o f many o f these conditions, the relative paucity o f research into effective treatment for these children, and, possibility, because o f the relative invisibility o f these children i n the grand scheme o f health care research and funding, these children and families could find themselves without effective treatment or without the necessary funding to access potentially effective treatment. In the words o f Dr. Joe Clarke, a national specialist in the field o f rare genetic disease in children, " i f you happen to be born with a rare disease, you do not have the same access to new, groundbreaking treatments as people who have more common diseases. A n d in fact, you may not be treated at all, ever "(Eaves, 2005, p. A 3 6 ) .  Chronic illness at school For the children i n this study, school policies, including how chronic health conditions were managed in children's classrooms, provided other examples o f decision-making in spaces where children's voices could be muted and their perspectives rendered irrelevant. Schools i n British Columbia tend to produce mission statements that espouse philosophies addressing the topic o f difference at school, highlighting principles o f equity and justice. The philosophy o f one district, for example, states:  - 152-  Since students vary widely in their backgrounds, needs and abilities, and since there is no single approach to learning, schools should adapt their educational programs and services to the needs o f each student insofar as an equitable application o f resources w i l l allow (School District N o . 38 Richmond, 2006). While this statement illustrates a philosophical commitment to the needs o f each student, the data o f my study demonstrate that the needs o f individual children did not always drive decisions about resource allocation at school, decisions that had profound influences on the lives o f the children and their parents. Several children and parents expressed views that that the distribution o f resources at school were unfair, that fiscal concerns triumphed over individual children's needs, and that services for children with "special needs" were terminated first when school districts experienced financial pressures.  One mother described this experience as she compared how her son was treated differently in two different school districts; while the support was officially the same across districts, the enactment o f that support varied. Describing the work o f certified education assistants i n the school, this mother linked the practical availability o f this support to the extent to which children with disabilities were valued differently i n the two systems. Whereas in their previous school the assistants stayed in the classroom and worked with her child and other children with chronic illness or disability, in the current district, the assistants were unavailable. Her scepticism about the roots o f this difference was reflected in her comment: "I don't know i f it's the school, because I've heard they don't even like kids with disabilities o f any kind, and now they're telling [us that] they don't have the funding for that."  65  Policy at the school district level as well as more localized decisions about how that policy was implemented for children with chronic health conditions—decisions that I suspect  65  According to district guidelines, this same boy officially qualified for home schooling, which was also rendered unavailable. In the mother's words, "So I phoned his school and they said, oh, no, we haven't done that in two, three years now. There's no funding for that." -153-  relied on some generic image o f chronically ill children—had enormous influence on the lives o f both the children and their parents. While policies and their enactment came to life in the lives o f the children, authority i n the decisional processes tended to rest far from the individual children and families.  Because authority sat at a distance from particular children and their representatives, it is reasonable to surmise that those who shaped decisions about medication funding for particular illnesses or resource allocation for children at school did so with some vision o f children's place in the world and some notion o f chronically ill children's interests. However, not all policy work took place at such a distance from the children. In upcoming sections, particularly as I describe participatory spaces characterized by children's tangible contributions and adults' assumed responsibility, I w i l l show how certain children and parents penetrated the policy world i n ways that enabled children voices, when heard, to achieve a certain standing i n structural and policy decisions.  To summarize, in a space characterized by children's silence—those places where children's voices were muted and their views were rendered irrelevant—authority sat politically or geographically at some distance from the child. Whether because the child was somehow rendered invisible in the relational context, or whether the child was represented by some general or generic understanding o f children and children's interests, in these places, children were silenced: children and their representatives were largely unable to penetrate the authority structures that dominated decisional processes.  A Space of Children's Tangible Contribution In contrast to a space characterized by children's silence, certain decisional processes unfolded in spaces where children's contribution was evident and tangible. In chapter four, I  -154-  described the decision made  he  b y 10-year-old L u c a s a n dh i s m o t h e r r e g a r d i n g w h e t h e r  a n d when  s h o u l d g o o n t h e r e n a l t r a n s p l a n t list. L u c a s a c t i v e l y p a r t i c i p a t e d i n that d e c i s i o n ; w h a t  wanted  w a s clearly expressed,  Spaces  o f c h i l d r e n ' s t a n g i b l e c o n t r i b u t i o n e x i s t e d i n sites like this, w h e r e  resonated  a n dw h e r e  a n dh i s intentions  gained standing i n the deliberative  those voices achieved relevance  standing within the authority structures, whether they  children's  A  where  o f this s p a c e h a dto d o w i t h t h e d i s t r i b u t i o n o f p o w e r .  children's v o i c e s w e r e h e a r d a n dw h e r e  those voices achieved  o f power varied across  children a n dacross  authority appeared to be located i n the k n o w l e d g e  to possess. I n other instances,  that  tangible  In yet other instances,  in spaces where  standing, the children held  o f this authority a n dits  situations.  In s o m e cases,  or w i s d o m they possessed or were  to have  a s a y i n particular matters that  children's  perceived  authority  influenced  children's authority seemed rooted i n a notion o f the child's  standing as a fully h u m a n being, the standing o f children's intentions  o f h u m a n dignity a n drespect.  In instances  w h e n portrayed as holders o f certain rights, children's  based o n s o m e sense o f their entitlement  their lives.  Children's  struggled to attain standing o r whether  at l e a s t s o m e a u t h o r i t y w i t h i n d e c i s i o n a l p r o c e s s e s . T h e s o u r c e s  was  voices  '  defining feature  manifestations  process.  i n the processes o f deliberation.  standing w a s granted to t h e m , is a vital consideration i n this space o f children's  contributions.  he  T h einterplay o f authority a n d agency  a n ddesires l i n k e d to  values  w a s particularly interesting  children were substantial contributors within decisional  processes.  Authority and agency: Forces at play in a space of children's tangible contributions In spaces o f children's tangible contributions, diverse patterns o f children's participation  unfolded. A t times,  decisions  children appeared to act outside  the reach o f adult authority,  largely uninfluenced b y parents, health care providers, o r teachers.  - 155 -  making  Other times,  adults  and children engaged in some sort o f collaborative process: processes that might be characterized as either negotiation or resistance.  W h e r e children claim authority In certain instances, children's decisions and actions appeared to mirror their intentions and desires, and the influence o f parents, teachers, or health care providers appeared minimal. Adults may have been physically present or they might have been absent. In this place, children's enactment o f authority ranged from apparently unpremeditated responses within particular situations, to carefully considered approaches to concerns they held about certain matters in their lives.  M a n y instances o f children's unpremeditated responses within the everyday events o f their lives could be understood as a particular form o f embodied responsiveness. This embodied responsiveness was evident in the account o f 7-year-old E m m a as she described a time when, contrary to what would be generally accepted as a good choice in diabetes management, she chose to fully participate i n a school class party—eating a banana split along with her classmates: The last day I had a feast. I had chicken, rice, corn, gravy and water and a banana split. A n d there was, I think, four workers doing it. Johnny, Pietra, Riley, Brianna, and they had to cook the food ... We got to make the banana splits.. . A n d then we ate. So Emma ate a banana split, a move that (at least on some level) she would have known would raise her blood glucose above acceptable levels. In as much as she presented a matter-ofact account o f her choice to eat the banana split, she was equally straightforward about the consequences o f that choice: Mom:  So, what happened after you had your banana split?  -156-  Emma:  I was 14.3. I had to do 12 laps around the gravel field.  Emma:  The gravel field. O k a y . . . . The gravel field is this big [gesturing  66  with her hands]. Y o u run like this and you stop there, and you run and you run and you run and you run, and you run and you run and run and run and run and run and run. L i k e Emma, other children regularly made seemingly independent decisions, decisions with implications for their day-to-day well-being and health. The extent to which Emma's choice was more a conscious decision or an embodied response is difficult to discern from the data, but, in this analysis o f children's participation, I ' m not sure that distinction matters. What is significant here is that E m m a had both the capacity and opportunity to act in accordance with what she wanted to do, and that her action was largely unimpeded by external authority.  I have included this brief story from Emma's account in order to illustrate that within spaces characterized by children's tangible contribution, children acted in accordance with their own wishes, often relatively uninhibited by impositions o f adult authority. Obviously, this rather thin analysis does not take into account certain manifestations o f adult authority and influences on Emma's agency that are unavailable i n the story I heard. It could reasonably be argued that, i n instances like this, children are never free from adult authority, that whether adults are present or not, their influence enters into children's thinking and acting. Interpreted this way, Emma's behaviour could be understood to take on tones o f resistance. Nevertheless, at least to some extent, in the decision about whether or not to eat the banana split E m m a acted in accordance with her own intentions and desires; her agency was substantial. It seems plausible that she was willing to trade off indulging i n this treat with her friends, fully appreciating that she would need to "run and run and run and run" to take care o f herself.  66  Emma was referring to her blood glucose level, which was 14.3 mmol/L. For school-age children, normal values for blood glucose are approximately 4-10 mmol/L. A blood glucose reading of 14.3 mmol/L is high, and Emma describes the exercise she engaged in to try and bring her levels down. -157-  Children's claims to authority sometime manifest i n more subtle ways. I noticed this particularly i n instances where a certain sort o f resistance could be discerned. Ten-year-old Natasha had a life-threatening allergy, but rarely wore her allergy alert bracelet, although Natasha's father and mother were quite insistent that she should wear it. A s is evident in the following excerpt, Natasha appeared to acquiesce to her parents' wishes, yet, while reluctantly agree to follow their instructions, she enacts a kind o f authority through quiet resistance: Dad:  [Speaking to interviewer.] W e got Natasha a MedicAlert™ bracelet and she doesn't wear it. We buy this thing, and they're not cheap— which is not the issue anyhow. But I mean it's important for her to have it. If something happens when she's walking the street, then somebody should know what's happening. A n d she doesn't— although she's very cautious about eating foods that anybody offers her—she doesn't take the same concern with wearing this MedicAlert™, and that's something I think she should.  Interviewer: [To Natasha] W h y don't you wear your bracelet? Natasha:  I don't know.  Dad:  She finds it uncomfortable. It's like wearing a watch. If you don't wear a watch for six months and then . . . you put it on it feels weird. But after a while you don't notice it at all, right?  Natasha:  Yeah.  Dad:  [Looking at Natasha.] It's something you should really work on doing, Natasha, because one day when you're found laying on a street—but i f you're found laying there and you're not breathing, somebody may think you've had a heart attack instead o f not being able to breathe.  The conversation continued in this tone for several minutes, Natasha's parents continuing to explain the importance o f the bracelet to Natasha and the interviewer, while expressing their frustration that Natasha would not wear it: Dad:  A n d we've got her a nice bracelet now. Like, it's actually not a bracelet. We tried three different bracelets from MedicAlert and -158-  they kept getting busted . . . A n d we got her a nice one with a nice sports strap, Velcro, very easy to handle. It is copper, isn't it? Natasha:  It snapped.  Mom:  It sort of—snapped.  Dad:  Oh, okay. Where is it?  Mom:  It gets put on i n the morning and then she comes home with it off, at school somewhere along the line.  Interviewer: Is it just because it's not comfortable that you don't like wearing it? Natasha:  That's one o f the reasons. I wouldn't bring it. I wear it to school, and sometimes it gets worn back.  In this interaction, Natasha's parents' claims to authority were at least threefold. They appealed to concerns for Natasha's safety and hinted at the problem o f expense o f buying unused bracelets. A related, perhaps more subtle, claim to authority was an undercurrent in their conversation, some notion that Natasha did not or could not fully comprehend the relationship between wearing a bracelet and her safety. In this conversation, Natasha's nominal efforts to describe to why she didn't wear her bracelet were largely dismissed; her view that her bracelet was uncomfortable did not achieve much status in the deliberations. Natasha:  It's uncomfortable. L i k e when you're writing or something, that's what—before I never used—like, I never wore it. W e l l , I still don't. But when I was writing and it jiist really pushed, and then after I'd get marks all the way around my hands because—  Dad:  But would you try wearing it more?  Natasha:  Yeah.  Dad:  Get used to wearing it all the time, so it w i l l become second—it would become—you could wear it all day long, you could wear it at night and it wouldn't be an issue at all after a while. - 159-  Natasha:  Okay.  I think this rather lengthy example illustrates an important point: that children's resistance, however passive it might seem, is in some way an enactment o f their agency. I don't pretend to fully comprehend the complex dynamics that underpinned this interaction between Natasha and her parents; history and relationship had roles in this story. O n one hand, Natasha's participation in this dialogue is minimal, even stifled, yet her contribution to decisions about whether or not she wears her bracelet is significant.  In both the examples I have provided here, children acted largely in accordance with their own intentions and desires, in spite o f (or perhaps, in the case o f Natasha, because of) adult claims to authority. In each instance, children assumed a certain degree o f authority. In an extreme manifestation o f what might unfold in a space characterized by children's tangible contribution, it is conceivable that children's views could be uncritically accepted and that these voices might achieve full authority. If children were seen to possess full rights to autonomy, or i f their wisdom was deemed absolute, the centre o f authority would shift ever closer to the child. There may be hints o f this possibility in certain expressed perspectives, such that o f the mother o f a 10-year-old child: "I think there's a wisdom there—she doesn't want it, I can't override it." However, there were no examples in the data that I could confidently interpret as instances in which adults relinquished all authority and children were, in that way, fully autonomous. This possibility exists as a theoretical outlier, an extreme manifestation o f children's voices 67  resonating and achieving full standing in decisional matters. From my own experience and as confirmed in conversations with parents and expert clinicians, the possibility exists; there are instances where adults concede to children and are prepared to accept the consequences o f  Theoretical outliers are those plausible variations in patterns of children's participation that likely exist but that are not captured within this particular data set (McPherson & Thorne, 2006). -160-  whatever  the c h i l d decides.  p r o j e c t is to d e v e l o p  T h i s theoretical possibility deserves i n c l u s i o n i f the p u r p o s e o f  knowledge  t h a t is r e f l e c t i v e  o f a wide range o f participatory  this  possibilities.  Questioning existing authority In the vast m a j o r i t y o f c h i l d r e n ' s accounts  o f their lives, structure a n d p o l i c y a p p e a r to  taken for granted, creating or constraining possibilities  f o r the c h i l d r e n to act i n a c c o r d a n c e  their intentions  I noticed children's questioning  a n d desires.  existing policies  policy decisions,  however,  a n d structures. U n l i k e the earlier e x a m p l e s  their  notable example,  the  lives.  11-year-old N a t h a n c h a l l e n g e d the s c h o o l practice o f  c h a n g e d , a n d the eventual result was  a shift i n p o l i c y t o w a r d a "peanut-free"  segregating  m u c h o f this effort w a s  Nathan's alone and h o w  children's voices b e c o m e s evident,  soon  school. T o  m u c h was  c o m b i n e d effort b y N a t h a n a n d his parents. In instances like this, the relational nature  a n d w h a t m i g h t b e u n d e r s t o o d o n first r e a d i n g as a  be  a  of  child  a c t i n g o n his o r h e r o w n behalf, after f u r t h e r c o n s i d e r a t i o n is better u n d e r s t o o d i n light o f  relationships a n d h i s t o r y that shape  children's intentions  appear c o m p r o m i s e d b y his parents' involvement;  was  certain  in  to the s h a p i n g o f  children with peanut allergies f r o m other children during lunch time. T h i s practice was  honest, I a m unsure o f h o w  with  of  describing children's silence  these children contributed, albeit often in small ways,  structures that constituted  In one  In rare instances,  be  a n d capacities. Nathan's agency  rather, his ability to s p e a k o n his o w n  support b y a n d t h r o u g h the w o r k undertaken b y his  the  did  not  behalf  parents.  Sharing authority in space of children's tangible contributions T w o  relational patterns characterized the space o f c h i l d r e n ' s tangible  implicit i n these patterns are particular notions  M o r e  specifically,  about w h o  contributions;  children are a n d w h o  they can  be.  i n this s p a c e o f c h i l d r e n ' s t a n g i b l e c o n t r i b u t i o n , the c h i l d r e n ' s v i e w s h a d to  -161 -  be  in some way valued, and their standing in decisional contexts at least partially negotiable. As a consequence, the sharing of authority was possible.  V a l u i n g children's contributions The sharing of authority that characterized this space was manifest in adults' orientation toward children, often echoing a certain stance of openness to the children's capacities and a curiosity about what children might think and want. Parents, in many instances, clearly articulated the perspective that their children ought to have at least some say and that the children's thoughts were important when it came to decisions that influenced their lives. One mother, although convinced that her son should not always have full or final say, held a view that hearing what he had to say was important: We have discussed everything with him now because he is 12 and he should know the final decision. If I feel that this is what's going to happen, this is what's going to happen. But he does have his say and I think it is important. I think he has to take responsibility or a hold of his own life. Shades of the tension between adult responsibility and children's agency are evident in this quotation; parents weighed their responsibilities to ensure the health and safety of their children, while simultaneously holding in mind a commitment to foster their children's independence and to respect their freedom. On one hand, the mother making the statement above is claiming that 68  she has the final say. On the other hand, she holds a perspective on the importance of her son's contributions, an awareness that her son must have the opportunity to take up his own interests. In this way, negotiation in a place of children's tangible contribution was often messy, fraught with contradiction and tension.  68  There was an undeniable hint of fear in this mother's voice; the weighing of responsibilities, and commitments to ensure children have a voice were never fully separate from the worries about their children's current state of health, and future well-being. - 162-  A s s u m i n g a stance of uncertainty Adults assumed knowledge o f what was best for children tended to limit the space available for children's contribution to decisions; a stance o f uncertainty did the opposite. Parents not knowing what was best, grappling with various interpretations o f the problems, entertaining various alternatives, created openings for the children's participation. In these places, adults inhabiting the space o f deliberation demonstrated a degree o f uncertainty about what it was that the child might want, need, or desire, or some uncertainty about what the best course o f action might be. Other times, a sharing o f authority was visible in the expressions o f deep and abiding concern for the child. This position o f uncertainty could be a place o f tension for adults; in such cases, uncertainty was expressed as conflict between some understanding o f their responsibilities as adults and a sincere respect for the child's views.  Ten-year-old Alexandra's mother recounted her struggle as she debated how to address her daughter's likely unrealistic intention to participate in a talent show: Like last year she wanted to be i n the talent show—she's wanted to be i n the talent show ever since kindergarten. A n d I thought, what is she going to do? She doesn't have polished skills. When I talked to the teacher about that she said, " W e l l , she's forming this little dance group and they're creating a dance at school." So then I thought, well maybe I should hire a dance teacher from the community centre and the girls could practice at my place on Saturdays and they could get a routine and it would look half decent, she wouldn't embarrass herself. A s events unfolded, Alexandra's mother did not intervene and supported her daughter's efforts. She went on to describe the outcome: Anyway, Alexandra just kind o f carried on with her plans with her friends, and they pulled it off, they actually did it, and I was sitting i n the audience just hoping that she wasn't going to embarrass herself. She did it and she didn't do any worse than a lot o f kids and there.. .and she was so happy. What I find interesting in this story is that while I would say that this is an instance o f decision-making that might be within a space o f children's tangible contribution, there is little - 163 -  evidence o f active negotiation between the parent and child. The child's views were clear and unambiguous, expressed through her action and words. The mother's deliberation took place away from the child, yet Alexandra had some agency, was granted standing i n the decisional process. Alexandra actively contributed to the decision about whether or not she would be encouraged to participate in this talent show. The negotiation was characterized by a stance o f some parental uncertainty and by a perception o f the child as a person deserving o f consideration and respect.  Children did not always get what they wanted, even when the space was evidently characterized by children's tangible contributions. The following story is important, because it illustrates the nuanced conversations that took place at certain times between children and parents, and the many and competing concerns that could find a place in difficult decisions. Eleven-year-old K y l e ' s mother was describing her heartfelt desire that her son be able to participate as fully as possible i n physical activities and at the same time be protected from the consequences o f overexertion. In her words, " K y l e is like a typical boy; he puts his all into everything. He wants to w i n too."  The decision K y l e and his parents faced was whether or not he would be allowed to continue participating in the track and field events o f the ongoing Special Olympics. He desperately wanted to continue, but was experiencing pain and shortness o f breath after each competition. . A n d so every night after he would come home and go to bed and then he'd have a problem in the middle o f the night. Every single time. Pain in chest, he has a headache or he can't breathe. M y husband said, "I don't think he should be doing this." A n d then it was me going, " W e l l , you know, he really likes it. I don't want to take it away from h i m . " Then h i m saying, "But, look at what happens during the night."  - 164-  So we're back and forth, too, in thinking whether we should and then who's going to break that little kid's heart. Is it gonna be you or is it gonna be me? A n d so I tried to sit down and reason with h i m and say, " Y o u know what's happening at night." I said, "I really know you love doing this but how do you feel about it?" He just looked at me and said "I really don't like having the pain at night." So, I mean he kind o f made that decision himself even though, I mean, it affects the whole family anyway because he's awake at night then everybody's awake. Unfortunately, he loved it and so he was really disappointed. So that was difficult for him. In the story that K y l e ' s mother told, manifestations o f authority were somewhat difficult to distinguish. What is evident is the substantial consideration that K y l e ' s expressed intentions achieved. In a more complex reading o f this story, K y l e ' s intentions appeared to be complex and competing: he wanted to be part o f the Special Olympics, but he did not like the pain that he suffered as a consequence. The intentions o f his parents seem remarkably similar: they wanted their son to participate in this activity and they wanted to support him to do so.; however, his suffering was difficult to witness, and the consequences for the family were significant.  A Space of A d u l t s ' Imposed A u t h o r i t y In an incident first described in the previous chapter, K y l e wanted a brownie, but no matter how he protested and begged, no possibility existed that he would get what he wanted. In instances such as this, while children's intentions and desires were clear and discernable, those voices had little status. These spaces were characterized by adult imposed authority: adults held the balance o f power, and their authority undermined the relevance o f children's expressed views.  There are few instances i n the data where, with confidence, I can declare that particular decisional processes were characterized by an absolute imposition o f adult authority. This may  - 165 -  not be s u r p r i s i n g , g i v e n the self-selection inherent i n v o l u n t e e r i n g to participate, o r  illustrative examples  provides a glimpse  that parents c h o s e to share w i t h m e .  at w h a t  in w h i c h a mother was  receive  describing her struggle  to d e c i d e  whether  or not her daughter  a r t i c u l a t i n g h e r b e l i e f that, i f she  w i t h g r o w t h h o r m o n e therapy, she  would have  daughter through manipulation or  force:  no choice  b u t to i m p o s e  segment  would  d e c i d e d to  proceed  that d e c i s i o n u p o n  her  6 9  g o i n g to get t h o s e i n j e c t i o n s , that g r o w t h h o r m o n e i n t o h e r . . . I t h i n k it  w o u l d be really going against her bodily consent. of them  example  s u c h a c a s e that m i g h t l o o k l i k e . T h i s e x c e r p t is t a k e n f r o m a  growth h o r m o n e therapy. She was  So if I was  P e r h a p s the f o l l o w i n g  the  A n d s o m e p a r e n t s d o that.  s n e a k u p o n t h e m w h i l e t h e c h i l d r e n a r e a s l e e p at n i g h t a n d t h e y  S o m e  g i v e it  to  them.  T h e image  o f s n e a k i n g u p o n c h i l d r e n a n d injecting t h e m i n the n i g h t is l i k e l y a n e x t r e m e  particularly graphic example  this e x a m p l e ,  one  o f w h a t m i g h t b e u n d e r s t o o d as adults' i m p o s e d authority. B a s e d  m i g h t be t e m p t e d to a s s u m e that d e c i s i o n - m a k i n g i n spaces o f adults'  a u t h o r i t y is h a r s h a n d b r u t a l ( h o w e v e r  however,  rare these examples  there w e r e m o r e subtle e x a m p l e s  be discerned. In these instances,  children's intentions  and  parents'  and desires largely  m i g h t be). T h r o u g h o u t the  on  imposed  data,  f r o m w h i c h shades o f adult i m p o s e d authority  and health care providers' strongly held v i e w s  could  rendered  irrelevant.  Rules, routines, and tests: Components of a space of adults' imposed authority In a space o f adults'  and desires was  expressed  69  diminished, generally  intentions  judgements  i m p o s e d authority, the  for the reasons  a n d desires might be d e e m e d  questioned,  standing o f children's expressed  the risks e m b e d d e d  that I detailed i n c h a p t e r four:  unreasonable,  their ability to m a k e  in various alternatives  intentions  children's  considered  u n d e r s t o o d to be too great,  or  Of course, the very fact that this mother is holding in mind what she knows her child would want moves this decisional process outward from a the realm characterized by adult's imposed authority and more toward a realm characterized by children's tangible contribution. -166-  their intentions subjugated to more pressing concerns. Whatever it was that undermined the relevance o f the children's voices, in a space o f imposed authority, firm boundaries partitioned existing authority and children's expressed views. Children's views, however expressed or represented, did not penetrate the adult-held authority structures that constituted the places o f deliberation.  "So, as I say, I made some rules." These were the words o f one mother as she described how she ensured her daughter's adherence to her diabetes management regime. Rules, routines, and tests at home and school were places where the partition between adult authority and children's expressed views were made visible. In the following excerpt, 11-year-old Jenna's mother described their process o f decision-making as she and Jenna's father determined whether or not they would allow Jenna to go on a trip to another province. Jenna had expressed a clear and unambiguous desire to go on this trip, to attend a summer camp in province part way across the country. In this instance, the boundaries o f adult authority were made explicit, formalized in a sort o f test: When she shows her independence and her proficiency, she can go for week-long camps. There was a choice. She could go to [the province] by herself this summer, but she had to be able to prove that she could do everything independently. She didn 'tpass the test. Jenna didn't pass the test. In this instance, Jenna wanted to go to camp; that intention had been made clear. In this place o f decision-making, Jenna's intention could achieve relevance only i f she passed the test—if she met some pre-established criteria against which her behaviour was judged. The perceived risks associated with poor diabetes control outweighed any argument that Jenna might make to defend her stance that she should go on the trip. Expressing her thoughts about this standard, Jenna said, "That's not fair," to which her father responded, " Y o u can take it on Jenna. Y o u can take it on any time you want. Y o u can just do it and succeed."  - 167-  A s in Jenna's case, failing to respect the bottom line could result in certain imposed sanctions. Nine-year-old Scott's activity was severely restricted as he awaited surgery for his heart condition. One day, contrary to the rules that had been established, Scott was found outside by his brother, running and playing. In response to this situation, his mother commented: I had to ground him one day where I said, "look, you're disobeying M o m , you're disobeying the doctors, we're trying to keep you alive here before you have surgery and you go off and do this. That's it. Y o u ' r e i n the house the rest o f the day." A s in the cases o f Jenna and Scott, there are many, many examples in the data o f boundaries set by adults: expectations set in regard to how children ought to behave in particular circumstances, and conditions created where children's options were limited. For example, for most children with severe food allergies, scrutiny o f ingredients before the child was allowed to consume any food was non-negotiable. A n d for children with diabetes, such as Emma, there were rules about what to do with high or l o w blood glucose readings: Mom:  So what do you do when you're 2.7?  Emma:  Take these little candies, all pure sugar. Y o u have six i f they're  70  little and three i f they're big. A n d you test in 15 minutes—wash your hands and test in 15 minutes and see what you are. If you're still low, you do the same thing ... A n d then you wash your hands and i f you're up, you eat lunch. Is there really any decision when it comes to Emma's behaviour in response to blood glucose readings? Does E m m a have any choice? Maybe, maybe not. But it is in these everyday accounts o f entrenched rules and routines that limits set by the adults in children's lives are manifest. Although there is a bottom line that underpins most rules and routines, in many instances these rules provide important structure i n the lives o f the children. For Emma, what she would do when her blood glucose was low seemed rather taken for granted, or at least a part o f a well-  70  Emma's mother was referring to a blood glucose level of 2.7 mmol/L, which is dangerously low. -  168-  accepted routine. She didn't have a say in the parameters that surrounded this part o f her life, and i f she failed to follow the rules, or i f routines were broken, certain sanctions might follow.  Children's positioning in a space of adults' imposed authority Policies and practices in a space o f adults' imposed authority tended to reflect some belief that children and/or their parents were incapable o f reasonable judgement, or that the children were at risk o f some harm that they or their parents might not comprehend. A s the medical authority based i n perceptions o f wisdom moved further away from the child, the resonance o f relevance o f the child's and parents' voices tended to diminish and opportunities for participation diminished.  A view that kids don't understand "But she's a kid. She doesn't care." These were the words o f one mother as she described her daughter's sensibilities when it came to the vital issue o f fluid intake. Eleven-year-old Shauna had renal failure; for that reason, her fluid intake was restricted, requiring careful monitoring. A s she described her daughter's pleas to be allowed to drink extra fluids, this mother summarized her position: "They don't get it. They're just kids." In cases like this, even though children's views were accepted as reasonable i n some way, the wisdom o f those intentions could be understood to be limited by children's immaturity and inexperience. Whether implicitly or explicitly expressed, perceptions o f children as immature and incapable o f sound judgement could culminate i n decisional processes in which children's expressed views achieved little or no standing, and where the boundaries separating adult authority and children's agency were firm.  Often, the authority granted to health care professionals created boundaries that reduced the potential for children's voices to achieve any relevance in certain decisional contexts. One  -169-  mother described her struggle in the early days following her child's diagnosis with osteogenesis imperfecta: [ M y son said] " O h ! M y G o d I don't want this." But you kind of just go along with what everybody tells you ... "Okay this is what you should do, that is what you should do." Sometimes it is not that the decisions are wrong but sometimes you don't feel that you are making them. This mother described how, as she gained experience and expertise in managing her child's care and in working with health care providers, she became more able to hear her son and to attend to his views. In this way, under some conditions, authority could shift outward from the child and family and could come to rest in the expertise and positioning o f the health care professionals. A s authority moved outward, the relevance o f the child's voice tended to diminish. In this case, as the mother gained confidence i n her own knowledge and the knowledge o f her child, authority once again moved inward.  Deciding whether or when to insert their authority was, for several o f the parents in this study, clearly a matter o f reflection and debate, and sometimes led to soul-searching about their beliefs about children and their role in relation to their children. In the following excerpt, 7-yearold Emma's father is describing his responses when a friend arrived at the house asking his diabetic daughter to buy some o f the kool-aid she was selling: She knocked on the door and asked for Emma. So, I ' m standing in the garage and listening to the conversation and she's trying to sell this kool-aid to Emma. So o f course my immediate reaction is E m m a can't drink that because she has diabetes, so I've labelled m y kid, "the diabetic." A n d I ' l l walk away from the situation after the other child's gone, and I think, maybe I shouldn't interfere on behalf o f my child. So it's hard to know when you should intervene and how much you do intervene. I think that this is an important point, that the imposition o f authority was sometimes the product of a parent's or health care professional's conscious deliberation as they weighed what they  -170-  understood as their responsibilities to protect and nurture the child against the consequences o f an actual or potential choice the child might make.  The privileging of other voices The following is another example o f the triadic relationship between health care providers, parents, and children, and the consequences o f the relative distribution o f power within the relationship. In this segment from an interview with 11 -year-old Leanne and her mother, the ascription o f wisdom to medical authority undermined the child's standing. Leanne had osteogenesis imperfecta and, as a consequence, her bones were brittle and prone to fracture. Leanne wanted independence and resisted the stigma associated with taking the "special" bus to school. She had already expressed this sentiment and, as the conversation moved toward Leanne's experiences at school, her mother implied that Leanne should appreciate the generosity o f the school in providing this service to her: Mom:  [to Leanne] A n d what else does the school do for you? What comes to pick you up every single morning?  Leanne:  I don't like that part.  Mom:  Yeah, b u t . . .but instead o f you having to walk, right?  Leanne:  But I ' d rather walk.  Mom:  Yeah, but Dr. S. says it would be too hard on your bones.  The privileging o f an external authority, in this case the physician's view o f what was best for Leanne, made the issue o f transportation to school largely non-negotiable. Throughout my conversations with this mother and child, I noticed a similar tendency to privilege unquestioningly the advice o f health care practitioners, and I wondered how that tendency limited the extent to which both mother and child were able to contribute to certain decisions.  - 171 -  In a space o f adult's imposed authority, children's voices could be heard, but because those voices were deemed to be unreasonable or insignificant, children could not achieve status in decisional processes. Children's voices diminished i n status when the children's capacity to make reasonable judgements was called into question, and when voices somewhat external to the decisional process were granted authority.  A Space of Adults' Assumed Responsibility A space characterized by adults' assumed responsibility appeared to resemble, at least on the surface, a space o f adults' imposed authority. In both, adults were the primary decisionmakers, and in both, individual children's views were not well accounted for i n decisional processes. K e y differences, however, existed. In a space o f adults' assumed responsibility, although children appeared to hold standing as unique and respected human beings i n decisional processes, for various reasons, children's voices were muted. Perhaps the most obvious examples of decisions within this space existed where children were too i l l to formulate and express intentions and desires, or where, because o f cognitive or emotional immaturity, they were deemed unable to comprehend the nature o f certain decisions. In a space o f adults' assumed responsibility, children's interests are represented by adults (usually parents) as they endeavoured to make decisions on behalf o f the children.  Representations of children in a space of adults' assumed responsibility In a space o f adults' assumed responsibility, children's participation was restricted. Children were not invited or were unable to enter into decisional processes. They depended on parents, teachers, and health care providers to represent their interests in places o f decisionmaking. Parents often advocated for their children. Many times the children were unaware o f the issue or debate in which they were being represented; sometimes children were aware o f the  - 172 -  issue, but uninvolved in the discussions. In these places, all the complexities o f parents' representations o f children's intentions that I detailed in chapter four become visible.  The work o f certain parents and health care providers to represent children in the fight for resources provided v i v i d examples o f adults' assumed responsibility. Parents advocated for their children to ensure that their children held standing at school, i n the clinic, and in health care policy decisions. One mother devoted endless hours to accessing a medication that her child needed, a medication not yet approved by Health Canada, and not funded by any source. This medication was accepted in other parts o f the world as an effective treatment for her son's condition, reducing the progression o f symptoms, potentially prolonging children's lives. A t the time o f data collection, her son, 8-year-old Jarod, had been accepted into a clinical trial conducted by the drug company, who thus covered the cost o f the medication. Within 6 months, that trial would be complete, and the prohibitive cost o f $300,000 per year would fall on the shoulders o f the family. The work o f this mother and the child's physician to access the drug was extensive. In spaces o f adult assumed responsibility, adults in children's lives took on, for various reasons, the work o f decision-making, and children were not invited to directly participate in decisional processes.  Protection and nurturance in a space of adults' assumed responsibility In the data, there were several examples o f times where parents or health care providers believed that children could not or should not contribute to certain health decisions, however respected those children might be. There were instances where children were too i l l to comprehend what was going on, and there were times when the children seemed to be limited in their capacities to comprehend certain problems. Importantly, within the accounts by parents there was a subtle suggestion that there was something morally questionable about drawing children into decisions where their ability to comprehend was limited and where, because o f that, -173-  their input would not likely be taken into account. While these children inhabited an important position in decisional processes, their voices were muted.  D e c i d i n g for the c h i l d In the following excerpt, 10-year-old Alexandra's mother is describing a difficult decision regarding whether or not Alexandra should commence speech therapy. This mother did not include Alexandra in the decisional process, because she believed that her daughter could not adequately comprehend the nature o f the problem. Alexandra's mother believed that, for that reason, Alexandra's view (which would likely be against the commencement o f therapy) could not be reasonably incorporated into the decisional process: She doesn't hear that her speech is [sometimes incomprehensible] and that's part of her problem. What she's hearing ... it all makes sense to her. It's not like she's not producing the sounds that she thinks she hears. T o me, that decision definitely falls into my realm. In this instance, Alexandra's voice is (literally), at best, faint. While she was not consulted, it could be reasonably argued that she held significant standing in the decisional process.  Somewhat similar to the previous example were those instances in which children were shielded from certain decisions, where adults endeavoured to protect children from perceived harms. Whatever the foundation o f beliefs about the need to protect children, in these instances, the consequence was that children were neither aware o f the problems and the decisions, nor were their opinions elicited. In the following example, a mother described her decision-making process regarding adjustments in 11-year-old Jenna's insulin dosage through her insulin pump.  71  This mother was very clear that these decisions ought not to fall on the Jenna's shoulders; it was a responsibility that she, as a mother, assumed:  71  Insulin pump therapy uses a battery-operated, external pump, which is about the size o f a pager. The pump continuously delivers fast-acting insulin under the skin through a catheter, inserted using a small needle, which may be removed, leaving only the catheter or tubing under the skin.  -174-  A n d you know I ' m the one who makes the decision to boost the basal rate i f she's going through a growth spurt or she's sick or something. So I make the adjustments to the basal rates. Jenna is not involved with that at all. Although this mother seemed quite confident i n her decision that she should control her daughter's insulin dosages, other parents expressed more ambivalence about how and when to assume responsibility for decisions in their child's health care.  Deciding whether or not to involve the child Another, more subtle category o f decisional processes that might fall in a space characterized by adult's assumed responsibility involved those decisions where adults struggle with how they would approach decision-making with or for their child. Parents' accounts were full o f these kinds o f quandaries: descriptions o f their struggles to craft an approach to their children that would be congruent with their beliefs about parenting, chronic illness, and their child. B y the very nature o f many o f these decisions, children could not be directly involved. Parents grappled with decisions such as whether or not to encourage their children to participate in certain activities, or whether or when to inform their children about certain diagnoses or risks.  In the next excerpt, 11-year-old K y l e ' s mother was describing a new treatment i n K y l e ' s care, one that would have a significant impact on his daily life and that would involve daily needles. This mother and her husband had to decide how and when to inform K y l e o f this treatment. In a sense, they grappled with the moral problem o f how to respect K y l e as a unique human being, to include him in a decision that w i l l greatly affect his life, and yet protect h i m from undue fear and anxiety. These were her words: We're kind o f toying with how we are going to [tell Kyle] and how to make it easier for h i m to understand that. A n d I think a lot o f times he gets nervous because he doesn't really understand, so helping h i m understand —that is always a concern for us because we don't want h i m to panic. H e has tendency to get anxiety. W e ' v e seen that before and so it's not worth it for us to panic him.  - 175 -  I don't think there could be any doubt that these parents' orientation toward K y l e positioned him as an important contributor within the decisional process. The decision the parents faced was how and when to inform him about this difficult treatment.  A s in the above story, protecting children from worry, sadness, or pain underpinned many of the parents' decisions. Eleven-year-old Lucas's mother described her struggle to decide how and when to inform Lucas about the very recent death o f another child that Lucas knew well, a child who had a condition similar to Lucas: [He has often asked] am I going to die, am I going to die? He always asks me that now. I try to reassure him. I've never said anything negative to him. I ' m always thinking maybe [he w i l l die]. I haven't mentioned to Lucas. Y o u know, I don't know i f you've heard [that the other boy died]. I wouldn't know what to tell h i m yet. I don't want him to worry. In instances like this, parents faced decisions that only they could make, decisions that, by their very nature, could not include consultation with the child and yet necessarily incorporated the parents' understandings o f their child and the child's capacities.  In this space o f adults' assumed responsibility, while children's wishes and desires may have been considered highly relevant and important, and children held certain status i n the place of decision-making, what the children wanted in relation to particular decisions was largely unavailable within decisional processes. Children's voices were sometimes muted by illness or perceived immaturity, but many times by the nature o f the decision itself. In these places, children relied on representation by others who knew them well.  Summary Throughout chapters four and five, I have illustrated how, for the children in this study, participation in health care decision-making was, first and foremost, a complex and multifaceted activity. Narrow interpretations o f participation failed to do justice to the complexities o f health -176-  care decision-making in the lives o f the children and their families, tending to extract children from the temporal and relational contexts wherein their intentions were formulated and though which those intentions were expressed. In this analysis, I have proposed a more robust conceptualization o f participation, one that takes into account the physical, familial, political and social influences that shaped and constrained the children's opportunities and capacities to participate in decisions.  In this chapter, I have begun the project o f portraying children's participation as shaping and being shaped within moral or social spaces. V o i c e and standing interplay, resulting in spaces variously characterized by children's silence, children's tangible contributions, adult imposed authority, or adult assumed responsibility. This view o f children's participation, however blunt it might be in its depiction o f children's and parents' experiences, makes visible certain sites wherein health care providers may hold responsibility. Difficult questions arise: What is morally relevant about the structure o f and dynamics within existing spaces o f decision making? What responsibility do health care providers and policy makers hold as architects o f participatory spaces? These are questions I take up in chapter six.  - 177-  CHAPTER 6 C H I L D R E N , PARTICIPATION, AND H E A L T H C A R E DECISION-MAKING Given that I entered this project explicitly interested i n the moral status o f chronically i l l children, it is hardly surprising that much o f the findings presented in chapters four and five centre on my interpretations o f the positions o f children in decisions and decision-making, and depict dimensions o f those processes that are constitutive o f children's standing. In this analysis addressing school-age children's contributions to health care decisions, however, significant shifts occurred, resulting in a re-evaluation o f what I understood as children's participation; a rethinking o f what constituted decisions and decision-making in children's health care; and perhaps most importantly, a re-conceptualization o f what it was about concepts o f participation and decision-making that may be important in the ethical analysis o f children's participation. In this chapter, I explore some o f the implications o f these shifts in thinking.  Before I go on, I want to clarify where I am locating the findings o f this project within the broader field o f knowledge and knowledge development for health care policy and practice. The findings from an interpretive descriptive project become knowledge when those interpretations are explored in light o f existing health care practices or policy and as they are tested for their utility in informing those practices or policies. To some extent this process 72  began i n the research process itself, as early interpretations o f the data were tested against subsequent data; interpretations were then evaluated by expert nurses who, in thoughtful responses to the interpretations I was developing, judged the "fit" o f the findings. M y project i n this chapter, then, is to continue my examination into how the interpretations I presented in 72  This perspective on knowledge generation is rooted not only in how I have come to understand interpretive description as methodology, but also in the pragmatist foundations of the research question itself. Pragmatism demands that, in our knowledge development efforts, that we not lose sight of the problem that brought us to the project in the first place. Holding the problem in mind was vital in this project, particularly as the data (and my analysis of it) challenged the adequacy of the foundational concepts of participation, decisions and decision-making. -178-  chapters four and five might contribute to the knowledge that nurses and other health care providers draw on as they endeavour to deliver ethically sound health care to children with chronic health conditions. T o achieve this, I concentrate on aspects o f the two foundational themes within the findings: (a) the question o f participation—what it is and why it matters what we believe it is; and (b) the features o f the moral spaces o f participation, and how attending to these might lead us to imagine and shape health care policy and practice with and for chronically i l l children.  I began this project believing that (a) children ought to be full members o f our human community, and their voice in matters that are important to them matter; (b) for many reasons, children are a vulnerable group, their voices may be easily dismissed and suppressed; (c) because of their illnesses and the treatments associated with those illnesses, children with chronic health conditions may be a particularly vulnerable group, and; (d) in regard to all these matters, adults have certain moral responsibilities. This perspective stands, but through this project my thinking about these matters has consolidated, and I have come to understand participation itself in a very different way.  Toward a Moral Understanding of Children's Participation A t the outset o f the study, I understood children's participation i n health care decisionmaking as a marker o f children's status, a site where adults' beliefs about children's autonomy and agency, their rights and interests, would be made evident, and where the influence o f these beliefs on children's opportunities and capacities would be revealed. The research questions reflected my curiosity about the multiple influences on children's participation, including those arising from adult perspectives on children and their interests, and those that might rest in the social, economic, and political contexts where decisions unfold. A s I proceeded, I encountered  - 179 -  some very challenging questions, questions that at times seemed to undermine the very foundations o f the project.  A s the project progressed, I began to more fully appreciate that all health care practice with or for children can be understood to be linked to values underpinning notions o f participation. In this process o f inquiry, my thinking has been challenged and guided by conversations with scholars who have grappled with ethical questions o f human subjectivity and health care practice, and by certain authors within the disciplines o f nursing (Liaschenko, 1997; 73  1999), human geography (Aitken, 2001; Crooks, 2006; Smith, 2000; Valentine, 1996) and education (Masschelein & Quaghebeur, 2005). In addition to these, the work o f Walker (1993, 1998, 2003), as she inquires into the nature o f moral life, and as she carefully critiques notions o f vulnerability and responsibility within the moral spaces o f human existence, has been enormously helpful.  Why We Should Care about Children's Participation Morality  is about mutual understanding  and habitable ways of life.  Margaret Urban Walker (1998, p. 6)  Repeatedly in our literatures, where theoretical or empirical arguments for children's participation are advanced, certain phrases paraphrasing Article 12 o f the U N Convention on the Rights o f the C h i l d (United Nations Children's Fund, 1989) appear. "Children have the right to be consulted," "children have the right to have their views taken into account" or variations on this theme anchor and justify arguments for children's inclusion in various domains; whether health care, school, or family life. Although participation is generally held as a unquestionable good, I think the findings o f this study support a critique o f our assumptions about why is that we  73  I want to acknowledge my dissertation supervisor and committee members here, who in different ways and at different times, posed questions or thoughtful alternate understandings, challenging my thinking and unsettling my existing analytic frames. - 180-  are c o n c e r n e d about children's participation, a n d w h a t  to e n h a n c e  the i n c l u s i o n o f c h i l d r e n i n matters  This question  of what  m a n y recent debates i n the  it is t h a t w e  field  o f ethics,  it i s t h a t w e  h o p e to a c h i e v e  o f importance in their  in our  efforts  lives.  are h o p i n g for i n o u r m o r a l deliberations has  d e l i b e r a t i o n s a b o u t w h a t it is that w e  think  fuelled  our  empirical and theoretical projects can provide. W h e n I think about what k i n d o f m o r a l thinking  will enhance  question  practice w i t h c h r o n i c a l l y ill c h i l d r e n , I realize that u n d e r p i n n i n g m y  is a b e l i e f that w h a t  something  is r i g h t a n d g o o d  cannot be understood outside  about the contexts w h e r e practice takes place, a n d a n acceptance  of  a n s w e r to  knowing  that there is  no  "compact, propositionally codifiable, impersonally action-guiding code" (Walker, 1998,  w h i c h to j u d g e  adequate  e n g a g e i n the matters  environments;  o f their lives; where  and where  a n d constraints.  m o r a l b e h a v i o u r . R a t h e r , m o r a l i t y sits i n the p l a c e s  they  individual intentions,  O u r c o n c e r n , then, is h o w  we  So when  whether  they have  h o w  where  and with  abilities, a n d capacities  possibilities  encounter  c a n understand the complexities  o f these  existence,  m y  however  about  issue  habitability  74  o f those places  o f  o f  co-construct.  i n q u i r y into c h r o n i c a l l y ill children's participation in health  d e c i s i o n - m a k i n g b e c o m e s a n i n q u i r y about the  their  places,  their life, but also about the m o r e c o m p l e x  c h i l d r e n g a i n entry into the spaces o f d e c i s i o n - m a k i n g they h a v e a right to  P o s i t i o n e d this w a y ,  by  humans  it c o m e s t o c h r o n i c a l l y i l l c h i l d r e n , m o r a l d e l i b e r a t i o n is n o t o n l y  a say i n matters that affect  p . 7)  exist in relation with other h u m a n s  c r e a t i n g a n d s h a p i n g t h e m i n w a y s that e n a b l e h u m a n b e i n g s to l i v e a g o o d  defined.  this  care  decision-making.  W h a t is i m p o r t a n t a b o u t p a r t i c i p a t i o n rests i n a n u n d e r s t a n d i n g o f w h a t is g o o d f o r c h i l d r e n a n d  their parents, a n d the c o r r e s p o n d i n g responsibilities  m i g h t h o l d ? D e p i c t i n g participation i n this w a y  74  that health care p r o v i d e r s a n d p o l i c y  deflects the e m p h a s i s  away  from some of  makers  the  By habitability, 1 am referring quite broadly to the extent to which those places of decision-making are fit and good to exist within. -181-  traditionally held m o r a l concerns—judgements  toward a m o r e relational and contextual  view  of competency,  discernment o f  interests—and  o f c h i l d r e n ' s c o n t r i b u t i o n to d e c i s i o n s  and  d e c i s i o n - m a k i n g . It s h i f t s o u r g a z e f r o m t h e q u a l i t i e s a c h i l d m i g h t o r m i g h t n o t p o s s e s s  t o w a r d the m o r a l a n d social r e a l m s w h e r e  authority and agency  are  enacted.  O f course, what creates a m o r a l l y habitable place o f decision-making c a n be  in very different ways.  Questions  benefits children, can be answered  perspectives  o f the g o o d i n participation, a n d h o w  quite differently f r o m diverse  is c a p t u r e d b y S i n c l a i r ( 2 0 0 0 ) i n h e r a n a l y s i s  and  understood  contribution to  standpoints.  decisions  T h e diversity  o f the range o f theoretical  of  and  empirical projects addressing children's participation. Justifications for children's participation  include the f o l l o w i n g  •  intents:  to u p h o l d c h i l d r e n ' s rights: c h i l d r e n are citizens fundamental  •  to fulfill legal responsibilities: U N  •  rights to participate as  users a n d share the  same  other  the right o f c h i l d r e n to be c o n s u l t e d  C o n v e n t i o n o n the R i g h t s o f the  to i m p r o v e services:  and service  is i n c l u d e d i n  the  Child  c o n s u l t i n g w i t h c h i l d r e n e n a b l e s services to b e i m p r o v e d a n d  a d a p t e d to m e e t c h a n g i n g n e e d s , w h i c h c h i l d r e n c a n h e l p d e f i n e ; p a r t i c i p a t i o n g i v e s them a level o f influence  and an element o f choice  c a n help t h e m understand their o w n  •  wants and  about the p r o v i s i o n offered  needs  to i m p r o v e d e c i s i o n - m a k i n g : p a r t i c i p a t i o n leads to m o r e accurate, relevant w h i c h are better i n f o r m e d a n d m o r e  l i k e l y to be  to p r o m o t e c h i l d r e n ' s protection: p a r t i c i p a t i o n is a n i m p o r t a n t a i d to  •  to e n h a n c e  communication, negotiation,  •  to e m p o w e r self-efficacy  and enhance  prioritization, and  decisions,  implemented  •  children's skills: participation helps  and  in developing  protection  skills useful  for  debate,  decision-making  self-esteem: effective participation can provide a sense  a n d raise self-esteem (p.  1-2)  - 182-  o f  This list clearly echoes much o f what I heard from parents and health care practitioners in this study. A l l are arguably laudable reasons to be concerned about children's participation, and may provide sufficient justification for fostering children's participation in many instances. What is evident to me, however, is that children's participation is being asked to serve many purposes, yet sometimes these purposes are incompatible with one another; certain discourses o f participation deflect attention toward other priorities, such as children's growth and development or adults' legal obligation, obscuring attention to the moral contexts o f children's lives and the habitability o f their everyday existence.  For these reasons, I believe that attention to how we orient our efforts to foster children's participation is vital, and that we need to be clear about our motivations. Failure to do so may serve to reproduce and entrench certain notions o f children and childhood and generate corresponding views o f adult responsibility that undermine children's existence as embodied beings, persons with standing in a complex world.  Why a Limited Concept of Participation Might Cause Harm Several authors have argued that many existing theoretical perspectives on children's participation in general (Arneil, 2002; Masschelein & Quaghebeur, 2005; Vandenbroeck & B i e , 2006), and children's participation i n health care decision-making i n particular (Alderson, 1994; Carnevale, 2004), have their roots the values o f liberal individualism; they see these origins as having fundamentally shaped prevailing views o f what constitutes participation, including justifications for why children's participation might be a good thing. W i t h its roots in notions o f rights, and with the autonomous individual firmly entrenched as an ideal, the word "participation" seems to have become some sort o f proxy for evidence o f an ideal human existence: a free-thinking, rational being who is capable o f formulating independent intentions, expressing those intentions, and who has the capacity to, on the basis o f such rational thought, - 183 -  influence decisions and generate change. This view o f participation draws attention to concepts such as children's competence, autonomy, and moral development, but, as I articulated in the findings, renders irrelevant many o f the complexities o f decision-making with or for chronically i l l children.  This privileging o f the rational, autonomous being o f liberal individualism has been attacked within various philosophical projects, most obviously perhaps, from within feminist camps (Alcoff, 1991; Gilligan, 1993), but also by philosophers from poststructural (Foucault, 1970) and pragmatist (Bernstein, 1992; Rorty, 1999) traditions. These thinkers have called the adequacy o f the individualist view o f the ideals o f human existence into question, and have articulated various harms that result from the dominance o f this view. Because o f their lack o f autonomy, and their not-yet-rational status, children occupy a very limited and restricted place i n liberal theory. Arneil (2002) summarizes the position as that o f "citizens in waiting." The role children play in ... liberal theory is one o f citizens in waiting, human beings who do not yet possess the necessary attributes o f citizenship, namely reason, autonomy, and the capacity for having authority over oneself, but w i l l possess them in the future ... Children are not ends in themselves but rather creatures in the process o f development, (p. 70) Other analyses suggest that the obsession with growth and development o f children that has developed during the past 75 years has direct links to the idealization o f this rational autonomous being, rendering childhood a time for education and training to create these kinds o f people. In a compelling analysis o f policy i n Norway, Kjorholt (2002) argues that the U N Convention on the Rights o f the C h i l d and the resultant theory and research addressing children's participation are firmly grounded in these ideals o f the rational autonomous, and that these values are manifest in discourses o f "normal" childhood and "normal" development (p. 70).  - 184-  This project was not intended as critique o f various views o f the subjectivities o f children and the implications o f these views for children's opportunities and capacities to contribute to the matters o f their lives. These notions o f children and childhood, however, have clear implications in analyses o f the social and political dimensions o f the space wherein decisions unfold. A s I entered this study, I held a notion that children's participation may well be relationally shaped. A t that time, I drew on the work o f Sherwin (1998), who depicts human autonomy as developed and shaped within relationships, and influenced by social structures. From this vantage point, I was, from the outset, interested in complex renderings o f the concept o f participation, in questioning certain assumptions about the limitations o f children's autonomy. M y finding that the children's voices were manifest in their own expressions but sometimes also through the expressions o f others, that children spoke through silences as they did through words and actions, and that, in many instances, making sense o f children's participation required attention to the relational context including the history o f their relationship with parents and health care providers, supports a relational and contextual understanding o f children's participation.  Conceptual challenges in enacting a vision of participation Throughout recent years, academics and children's advocates from many sectors have claimed that, in spite o f our supposed commitments children's rights (of which participation is one), we have progressed little in our efforts to foster children's opportunities to contribute to matters o f their lives, either at the individual level or at the level o f service development. For example, when it comes to school-age children with chronic health conditions i n our province o f British Columbia, children's participation appears largely absent from the agendas o f the three governmental departments that seem to have the most influence in the lives o f these children with chronic health conditions: the Ministries o f Health, Family and C h i l d Development, and  - 185 -  Education. Similarly, there is little evidence that children's participation is a priority for formal 75  workings o f the professional bodies for nursing or medicine. Even in response to governmental commitments to the enhancement o f children's rights, including the participation o f children in decisions that affect their lives (Government o f Canada, 2001, 2004), policy and practice guidelines that might promote participation are few, and those that exist are largely underdeveloped.  This relative silence at a governmental and service delivery level on the topic o f children's participation is important, and I suspect that it is grounded in something more than a lack o f commitment or resources. It may be that the standstill on this issue reflects persistent tensions embedded in conventional views o f participation, some o f the same tensions that manifest i n the analysis o f this study. I find it interesting that our experience in British Columbia, while similar to most other North American jurisdictions, stands in apparent contrast to efforts underway in Europe, specifically in the United K i n g d o m ( U K ) , where the federal government has taken up the "children's agenda," establishing a framework o f core principles for children's involvement across all government departments (Children and Y o u n g People's Unit, 2001). In 76  the U K , all government departments are required to document their efforts to create conditions for children's participation and to account for children's inclusion in these policies and practices (for the implementation o f these principles in the U K Department o f Health, see Department o f Health, 2002, 2003).  75  In British Columbia, our commitment to children's participation has progressed little beyond the key guidelines o f the Convention on the Rights o f the C h i l d (United Nations Children's Fund, 1989). Although these guidelines are echoed in the Infants A c t (Government o f British Columbia, 1996), these principles have been given little attention in the development o f policies for health care delivery or in guidelines for work with children and families.  76  The core principles established to guide policy makers include that departments must (a) show that " a visible commitment is made to involving children and young people, underpinned by appropriate resources to build a capacity to implement policies o f participation" (p. 10), (b) demonstrate that children's participation is a value and priority, and (c) develop approaches where children have equal opportunity for involvement (Children and Y o u n g People's Unit, 2001). -186-  The corresponding body o f empirical and theoretical research emerging from the U K experience provides evidence o f the many tensions that challenge enactment o f the children's participation agenda. While there are documented examples o f substantial and effective work to enhance children's participation in various domains, this movement remains subject to the critique that efforts to foster children's participation have been only selectively and partially successful (Franklin & Sloper, 2005). Researchers, policy makers, and practitioners continue to grapple with persistent questions o f what exactly they mean by children's participation, whose interests are being served when participation is held as an unequivocal good, and, o f course, how to proceed in fostering disabled children's participation in decision-making (Franklin & Sloper, 77  2005, 2007; Mayall, 2006b; McConachie, Colver, Forsyth, Jarvis, & Parkinson, 2006).  While there is much that we can learn from the U K experience, what I have come to understand in the current study leads me to wonder i f the views o f decision-making and participation embedded i n much o f the existing theory and research may be restricting possibilities, constraining rather than enhancing children's agency i n certain circumstances. I am concerned that the discourses o f participation and inclusion have become weak proxies for the larger, more morally significant issue o f the standing o f children i n society, health care, and everyday encounters, thus uncritically reproducing conditions that limit children's and families' possibilities, constraining children's agency. This raises once again the question o f what it is that we are looking for when we look for children's voices, when we advocate children's participation, and when we idealize participation as a marker o f a civil society. From a moral perspective, I think there are many questions that we have left unasked about how children's participation is related to the habitability o f their lives.  I used the term disabled here because, in much o f the literature from the U K , this term is used as an umbrella term for children with a variety o f conditions, including chronic health conditions. -187-  Challenging the perception of participation as an unequivocal good A limited view o f participation, particularly one uncritically grounded i n an idealization o f the autonomous rational individual, may be an insufficient foundation for moral work designed to ensure children's standing within decisions and the important matters o f their lives. If our moral responsibilities include, as I believe they do, ensuring that children's voices are heard and that they occupy and important and substantial place in the matters o f their lives, then notions o f participation may find a place in deliberations about what is right and good in our practice with children and their families. However, I think that there is substantial evidence that participation, particularly when understood as certain kinds o f action or as ah identifiable end point, ought not to be uncritically held as an unequivocal good i n and o f itself. The problem lies largely in two domains. The first is that the language and rhetoric o f children's participation can be used to serve many purposes, not all o f which are morally defensible. The second is that, in holding a limited notion o f participation as the measure o f ethical practice with children, we risk being blinded to other manifestations o f uninhabitibility o f the places o f decision-making with children.  A s I have already said, much hinges on the view o f children and childhood that underpins beliefs about and concepts o f participation. Embedded within any conversation about children's participation is some notion o f what or who children are and, correspondingly, their place i n the world. The findings o f this study suggest a view o f children as embodied beings, persons who hold intentions and experience certain desires, the formulation and expression o f which unfold in complex relational contexts. These relational contexts are characterized by enactments o f authority, and i n almost all cases, adults are the gatekeepers into places o f participation. Failing to account for these complex contexts restricts what can be seen and what might be considered relevant or important in analyses o f children's contributions to decisions.  -188-  Existing research exploring chronically ill children contributions to health care decisionmaking varies in the concept o f participation adopted, and in the notion o f children that underpins those projects. M u c h o f the research appears to adopt rather uncritically views o f children's participation as an unequivocal good, a view that serves as a launching ground for a search for the evidence that participation does or does not exist. Generally, these studies have tended to measure participation on the basis o f observable behaviours, or accounts o f parents regarding the existence o f such behaviours. For example, in their program o f research with hospitalized children and their families, Runeson, Hallstrom, Elander, Hermeren, and Kristensson-Hallstrom (e.g., Hallstrom & Elander, 2004; Runeson, Elander, Hermeren, & Kristensson-Hallstrom, 2000; Runeson et al., 2002) rely on "observed events, behaviors, words and sentences" (Hallstrom & Elander, p. 369) to make judgements about children's participation or non-participation. Through observation only, these researchers judged children's contributions to decisions on the bases o f th