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Meaning making within the social activity domain of health maintenance : the role of social networks Nimmon, Laura Eileen 2014

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MEANING MAKING WITHIN THE SOCIAL ACTIVITY DOMAIN OF  HEALTH MAINTENANCE: THE ROLE OF SOCIAL NETWORKS   by  LAURA EILEEN NIMMON    BA., Vancouver Island University, 2000 MA., University of Victoria, 2006    A THESIS SUBMITTED IN PARTIAL FULFILMENT OF  THE REQUIREMENTS FOR THE DEGREE OF     DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES  (Language and Literacy Education)    THE UNIVERSITY OF BRITISH COLUMBIA  (Vancouver)     October, 2014  © Laura Eileen Nimmon, 2014   ii  Abstract  This research explores how people embedded in their social networks actively engage in human meaning making about information and issues of health.  Framed by a theoretical perspective of literacy as socially situated, it sought to investigate the ways that social network interactions mediate meaning making within the social activity domain of health maintenance.  Using an ethnographic research design and a social network analysis orientation, this study explores patterns of social interaction and both macro- and micro-level aspects of social relations as they occur within socially situated contexts.  Data collection involved social network surveys, interviews, field notes, transcribed spontaneous talk, and the focal participant’s health maintenance literacy practices diary from December 2011 to December 2012.  Analysis of data included a social network analysis approach that gave macro level insights into the social structure of networks, as well as ethnographic qualitative analysis that explored the meanings by which participants understood and constructed their life worlds and the social meanings they linked to health information exchanges.  Analysis revealed how exchanges of health information within social networks were accomplished primarily through oral interactions, and how multiple individual and social factors intersected to create patterns of knowledge construction and meaning making around health information and issues in social network interactions.  Insights drawn from the data analysis also illustrated the ways health information flows through social networks that were shaped by different gradients of institutional and relational power dynamics.  These results of the analysis suggested that the processes of making meaning around health information and issues cannot be extricated from structures of power and the social networks within which these processes occur.  iii  Preface   This dissertation is original, unpublished, independent work by the author Laura Eileen Nimmon.   Ethics approval for this research “Social Networks and Health Literacy” was obtained from the UBC Behavioural Research Ethics Board. The Certificate Number was H11-02283.                                       iv  Table of Contents  Abstract ......................................................................................................................................... ii Preface .......................................................................................................................................... iii Table of Contents ........................................................................................................................ iv List of Tables ............................................................................................................................. viii List of Figures .............................................................................................................................. ix Acknowledgements ...................................................................................................................... x Dedication .................................................................................................................................... xi Foreword ..................................................................................................................................... xii CHAPTER 1: INTRODUCTION ............................................................................................... 1  The Problem .......................................................................................................................... 1  Operational Definitions .......................................................................................................... 2  Structure of the Dissertation and Research Questions .......................................................... 5 CHAPTER 2: THEORETICAL FRAMEWORKS .................................................................. 8  Situated Cognition ................................................................................................................. 8  Literacy as Socially Situated ................................................................................................. 9  Activity Theory ................................................................................................................... 12  Social Network Analysis Theory......................................................................................... 14  Critical Theory..................................................................................................................... 17  Summary of Theoretical Frameworks ................................................................................. 20 CHAPTER 3: REVIEW OF RESEARCH .............................................................................. 21  Social Aspects of Literacy ................................................................................................... 21 v   Social Aspects of Meaning Making around Health Information ......................................... 23  A Critical Perspective: Health Advocacy and Empowerment ............................................ 28  The Role of Social Networks in Literacy ............................................................................ 30  Rural Communities .............................................................................................................. 32  Summary of Review of Research ........................................................................................ 33 CHAPTER 4: METHODOLOGY............................................................................................ 34  Research Design .................................................................................................................. 34  Research Site ....................................................................................................................... 37  Researcher Location ............................................................................................................ 39  Researcher Role ................................................................................................................... 40  Entry Procedures ................................................................................................................. 41  Participants .......................................................................................................................... 42  Instruments .......................................................................................................................... 51  Data Collection .................................................................................................................... 54  Data Management ................................................................................................................ 59  Data Analysis....................................................................................................................... 60  Reliability ............................................................................................................................ 66  Validity ................................................................................................................................ 68  The Presentation of Results ................................................................................................. 68 CHAPTER 5: RESULTS: MEANING MAKING IN SOCIAL NETWORK INTERACTIONS AROUND HEALTH INFORMATION ................................................... 80  Results ................................................................................................................................. 80  Social Network Interactions around Health Information were Abundant, Fluid, and  vi   Encompass all Dimensions of Health ............................................................................. 80  Social Network Interactions Shaped the Meaning of Health Information   Exchanged ....................................................................................................................... 86  Personal Factors Shaped Interactions around Health Information in Social   Networks ......................................................................................................................... 89  Social Factors Shaped Interactions around Health Information in Social Networks ..... 90  Exterior Factors Contextualized Interactions around Health Information in   Social Networks .............................................................................................................. 91  Natural Rhythms of Change ........................................................................................... 92  Summary of Results ............................................................................................................ 94 CHAPTER 6: RESULTS: POWER, AGENCY AND THE FLOW OF HEALTH INFORMATION IN A SOCIAL NETWORK ........................................................................ 96  Participants .......................................................................................................................... 97  Data Collection .................................................................................................................... 97  Data Analysis....................................................................................................................... 99  Results ............................................................................................................................... 101  Individual Agentive Factors Shaped Institutional Power Dynamics to Shape the Flow   of Health Information through a Network .................................................................... 101  Relational Power Dynamics Inherent to Close Network Relations Shaped the Flow   of Health Information through a Network .................................................................... 107  Summary of Results .......................................................................................................... 111 CHAPTER 7: DISCUSSION .................................................................................................. 113  Limitations ......................................................................................................................... 113 vii   Social Networks and Meaning Making around Health Information ................................. 115  Power, Agency and the Flow of Health Information in a Social Network........................ 118  Implications for Theory, Research and Practice ................................................................ 120 CHAPTER 8: CONCLUSION ................................................................................................ 126  The Promise of the Social Network Analysis and Ethnography ....................................... 126  Closing Thoughts............................................................................................................... 130 References ................................................................................................................................. 131 Appendices ................................................................................................................................ 145  Appendix A: Complete Social Network Survey ............................................................... 145  Appendix B: Complete Demographic Survey ................................................................... 159  Appendix C: Open-Ended Interview Questions: Focal Participant ................................... 162  Appendix D: Open-Ended Interview Questions: Ego Network Participant ...................... 167  Appendix E: Focus Group Interview Questions ................................................................ 171  Appendix F: Focal Participant’s Health Maintenance Literacy Diary: Instructions ......... 174  Appendix G: Human Ethics Consent Form: Focal Participant ......................................... 175  Appendix H: Human Ethics Consent Form: Ego and Expanded Health Information  Network Participant ........................................................................................................... 182       viii  List of Tables  Table 4.1: Herbert’s Health Information Ego Network: Description of Participant Consent ..... 70 Table 4.2: Herbert’s Health Information Ego Network: Select Demographic Information ....... 72 Table 4.3: Examples of Documented Sources of Health Information That Were Not Between Live Humans ................................................................................................................................ 77 Table 4.4: Example of Permission to Audiotape Health Related Talk Extracted from Focal Participant’s and Network Participants’ Consent Forms ............................................................. 78 Table 4.5: Examples of Codes from Operational Definitions Coding Manual ........................... 79 Table 6.1: List of all 14 Codes that Informed Chapter 6 Analysis ........................................... 112              ix  List of Figures  Figure 4.1: Sociogram: Herbert’s Health Information Ego Network ......................................... 71 Figure 4.2: Excerpt from Herbert’s Health Maintenance Literacy Practices Diary ................... 73 Figure 4.3: Photograph Documenting Health Maintenance Literacy Activity ........................... 74 Figure 4.4: Photograph Documenting Health Maintenance Literacy Activity ........................... 75 Figure 4.5: Photograph Documenting Health Maintenance Literacy Activity ........................... 76 Figure 5.1: Sociogram: Expanded Health Information Network ................................................ 95                x  Acknowledgements  I would like to recognize the supervision of Dr. Victoria Purcell-Gates, Canada Research Chair in Early Childhood Literacy (2004-2013), who provided mentorship at the highest scholarly standards.  Her devotion to her students and to their success is recognized by so many in the field of literacy and is deeply appreciated by me.      I would like to acknowledge the invaluable feedback from my committee members Dr. Jim Frankish (Director, Centre for Population Health Promotion Research, UBC) and Dr. Bonny Norton (Department of Language and Literacy, UBC) who I invited to be on this committee because of my admiration of the quality of their own scholarly work.   I would like to acknowledge the assistance of Dr. David Tindall, Associate Professor in the Department of Sociology, University of British Columbia, for his invaluable feedback in the design and analysis of the social network analysis for this study.   I would also like to acknowledge the friends I made in the doctoral program in the Department of Language and Literacy Education, UBC.  Bong-gi, Rae, Maryam, and Amanda, your support of me both professionally and personally has been a gift to me.   I would like to finally thank Herbert who generously allowed me to explore his world for an extensive period of time, and all of the other participants who welcomed me into their lives during my time in the field.  xi  Dedication This dissertation is dedicated to my loving husband Robert Alex Fuhrman, and our precious son Liam Terrence Fuhrman.  You have shown me that life is full of miracles, and the profound meaning and transformations that come from loving social interactions.  Thank you also to my family who were so supportive throughout my doctoral program but especially at the very end, when I was juggling being a new mother and working on the final stages of my dissertation.                  xii  Foreword  When I was near the final stages of analyzing the data from this study, I spent a day at the Guggenheim Gallery in New York City.  At the gallery I viewed a painting that Picasso painted when he was in his early 20s, called “The Fourteenth of July, Montamartre” (1901).  I observed the painting for a long time trying to piece together what it meant to me, and why it had a strong visceral effect on me.  The painting is of a village-like scene: there are sky and clouds at the top of the painting, trees and buildings beneath the skyline, and a crowd of people below the tress and buildings, facing out towards the viewer.  The clouds, sky, buildings, trees, and people are all blended together; in other words, Picasso did not create boundaries between the forms.  Not only is every form connected in the painting, but the people are indecipherable in that I could not determine their gender, age, ethnicity, and so forth. All that I could recognize was their humanness through the outline of their human form.  In the bottom right hand corner, Picasso further expands the contiguous nature of the images by blending the human forms together into a washed blend of color and nebulous human outlines.  What struck me about the painting was the interconnectivity of all things, the shared experience of everything that exists, and the vulnerability and harmony of this whole living system. To me, the painting resembled the theoretical undertones I had found in this study in that it reflects my own resonance with this holistic and collective view of meaning making around health information. This study extends from conceptualizations of the human mind as an information processing vessel that thinks and then acts in linear and predictable ways, to emphasize what it means to be an individual with a mind that is embedded in the intricacies of a rhythmic social collective. The insights presented in this study untangle some of the complex layers of human meaning making, and offers new insights into the ongoing discovery that knowing is relational. 1  CHAPTER 1 INTRODUCTION  The Problem  This research was designed to explore how people, operating as social actors, make meaning around health information within the social activity domain of health maintenance. This study is positioned within a socially situated view of literacy and situates an exploration of the role of social networks in mediating meaning making around health information within previous ethnographic research conducted in the field of literacy. There are many socially situated literacies (e.g. school literacy, family literacy, entertainment literacy, health maintenance literacy, etc.), which can be differentiated by the domains of social activity they are embedded in (e.g. schooling, family, entertainment, health maintenance, etc.) (Vygotsky, 1987; Wertsch, 1998).  Although there is an abundance of research that describes how literacy is situated in social context, there is no research that explores the ways social network interactions mediate meaning making around health information within the social activity domain of health maintenance. The ultimate goal for this research has been to establish empirical evidence that highlights the unfolding of meaning making around health information as it is mediated by social network interactions. With this research an ethnographic research design and social network analysis orientation are used to analyze patterns of relationships in order to explore the ways health information flows through different social landscapes and the meaning people attribute to their social interactions around health information. This approach identifies social network members’ interconnectivity around the exchange of health information and maps their social relations, as well as explores the social meanings they bring to their relationships. This research will highlight the social and cultural nature of primarily oral 2  interactions around health information as existing within social networks.  Exploring this interactive process can help those of us in the field of literacy gain further insights into how meaning making occurs within contexts of use and where we account for the ways macro and micro level power systems contextualize meaning making around health information. Operational Definitions The following terms are defined and used for purposes of this dissertation:  Community: A social space constrained and conditioned by dynamic structural properties.  Communicative and symbolic interactions occur in this space that involve flows and patterns of resources, purposes, values, beliefs, and activities. Health: A state of emotional, mental, physical, spiritual, and dental well-being.  More specifically, health is the capacity of people to adapt to, respond to, or control life’s challenges and changes (Frankish, Green, Ratner, Chomik & Larsen, 1996).  Health Behaviour: The actions people take (or purposely do not take) for the purpose of enhancing physical, mental, emotional, spiritual or dental health.  Health Maintenance Literacy: An ever-shifting combination of written, spoken, visual, and numerical meaning making around health information, along with other symbolic and semiotic systems, which occur within the social activity domain of health maintenance where social activity centers around the maintenance of health (Purcell-Gates, Perry & Briseno, 2011). In this study, health maintenance literacy is used interchangeably with the term meaning making around health information.   I purposefully use the term health maintenance literacy to differentiate from the field of research and practice that is widely known as Health Literacy in public health and medicine 3  (see IOM, 2004; Nutbeam, 2008; Peerson & Saunders, 2009; Rudd, Moeykens & Colton, 1999; Sorensen et al., 2012).  Health Literacy as a field of inquiry in the health sector consists of a vast and well-established body of literature that has, for example, linked health literacy skills to knowledge of disease, hospitalization, health behavior, adherence to treatment, utilization of services, and health status (see IOM, 2004). Recently, literature in the field of health literacy has shifted its focus from the health literacy skills of patients and health outcomes to: (a) the health literacy environment of a healthcare facility (Rudd & Anderson, 2006), (b) the educational strategies and practices of health professionals (Coulter & Ellins, 2007; Pignone, DeWalt, Sheridan, Berkman, & Lohr, 2005), (c) the dynamics of physician-patient oral interactions (Amalraj, Starkweather, Nguyen, Naeim, 2009; Smith, Dixon, Trevena, Nutbeam & McCaffery, 2009), and so forth. Literacy Events: Literacy events are observable instances of reading, writing, listening, speaking, numeracy, and interpreting visual information, along with other symbolic and semiotic systems, such as reading information from a screen, signing a consent form, recording a dosage amount on a form, talking to a friend about childbirth, interpreting an x-ray image, or listening to instructions from a physician. Literacy Practices:  Literacy practices are purposeful and embedded in broader social goals, motivations for use, and cultural practices. For example, when cooking, the aim is to bake a lemon pie, and the reading of a recipe is incidental to this aim. The reading of the recipe is integrated into a broader set of domestic social practices related to providing food and caring for children, and it reflects broader social dynamics and gendered divisions of labour (Barton & Hamilton, 1998). Inferred from literacy events, literacy practices also involve unobservable values, feelings, experiences, attitudes and social relationships.  They can be described as the 4  social processes that connect people with one another, and include shared understandings that reflect beliefs and social identities (Street, 1993; Barton & Hamilton, 1998). These practices hold inherent meanings for the people involved, which vary according to the personal, social and cultural context (Barton & Hamilton 2000). Mediate: “Exhibiting indirect causation, connection, or relation” (Merriam-Webster’s online dictionary, 2014).  Wertsch (1998) describes how human activity is always mediated by cultural tools that are either material (e.g., written mode) - or immaterial (e.g. spoken mode).  In this study, I will use this definition of mediate to look at how social network interactions mediate meaning making around health information.  I will also use the term mediate interchangeably with shape to look at how different factors shape the meaning of health information exchanged. Social Activity Domain: Social activity domains are structured patterned social contexts within which literacy is used and learned. For example, the social activity domain of art is defined as social activity for individuals that centers around creative/artistic activities and is engaged in for purposes of developing, improving, exploring, performing within one’s creative/artistic area(s) of focus/interest/talent (see Purcell-Gates, 2013; Purcell-Gates & Perry, 2012 for descriptions of a range of social activity domains). Social Activity Domain of Health Maintenance: The social activity domain of health maintenance is defined as human activity around the maintenance of health (Purcell-Gates, 2013; Purcell-Gates & Perry, 2012).  For the purposes of this study, social activity around the maintenance of health includes social activity around physical, emotional, mental, spiritual, and dental health.  This can include, for example, social activity that centers around maintaining physical fitness and bodily care (Purcell-Gates, 2013; Purcell-Gates & Perry, 2012). It can also 5  include social activity around issues of nutrition, relationships, foot pain, sleep, stress, aging, and so forth. Some examples of health maintenance literacy events that occur within this social activity domain are reading prescription or shampoo bottles, filling in a medical form, reading health-related magazines, reading bathroom signs, keeping a dietary journal with calories, protein and carbohydrates, etc. (Purcell-Gates, 2013; Purcell-Gates & Perry, 2012).  Social Networks:  Social networks are the relationships that exist between interacting people, and the characteristic patterns of relational ties between these individuals in a social system (Wellman, 1988). Some examples of types of social networks can be (a) all of the people at a birthday party, (b) all members of a kinship group (c) all members of an organization, (d) a neighborhood, (e) landowners in a region, and so forth (Hanneman & Riddle, 2005). Structure of the Dissertation and Research Questions This document consists of eight chapters. Chapter 1 presents an introduction to the research and includes a statement of the problem and operational definitions that are used throughout the study.  Chapter 2 presents overarching related theoretical frames used to contextualize the study. These frames include: (a) situated cognition, (b) literacy as socially situated, (c) activity theory, (d) social network analysis theory, and (e) critical theory.  Chapter 3 presents a review of research relevant to the focus of this dissertation research: (a) empirical explorations of literacy as socially situated, (b) observations of instances of meaning making around health information that were captured by researchers working from a literacy as socially situated perspective, (c) research that brings a critical perspective to health advocacy and empowerment, and (d) research that explores the role of social networks in literacy.  Chapter 4 describes the methodologies employed to answer my research questions, which includes a description of an ethnographic research design and social network analysis orientation. 6  Chapters 5 and 6 present the outcomes of the analysis for two sets of research questions.  Chapters 5 and 6  present insights into the role of social networks in mediating exchanges of health information, describing health related interactions as an interactive meaning making process that unfolds in natural rhythms of living and being, as well as highlighting the ways that power relations are always integral to the constitution of health maintenance literacy practices.  In Chapter 5, “Meaning Making in Social Network Interactions around Health Information,” I used a broad research question that was designed to explore the role of social networks in mediating interactions around health information. This analysis explored the role of social networks in mediating knowledge construction and meaning making around health information by analyzing the patterns of social interaction around health information within a rural community, and how health maintenance literacy exists within and not separable from its contexts of use. The primary research question driving this ethnographic exploration, using a social network analysis orientation, was: “How do social network interactions contextualize and mediate health maintenance literacy behaviours, beliefs, values and practices?”  Chapter 6 entitled: “Power, Agency, and the Flow of Health Information in a Social Network,” is based on an analysis of a subset of the data from the larger study. This analysis specifically looks at issues of power and agency as they revealed themselves in ways that meaning making of health information unfolded within the social network.  The research questions for this ethnographic qualitative analysis were: (1) “What roles do institutional and close interpersonal power dynamics play in shaping the flow of health information in social network interactions?” (2) “How do people advocate for their own health or the health of others in social network interactions (e.g. what does this look like)?”  7  Chapter 7 presents a discussion into what the research insights can contribute to the broader community of research and practice in our understanding of how knowledge is constructed around health information. This chapter also discusses implications for theory, research and practice, as well as presents some research limitations. Finally, Chapter 8 concludes the dissertation with reflections on the promise of social network analysis and ethnography, as well as closing thoughts. Throughout the dissertation the reader will find that all the names of the participants and the name of the town are identified using pseudonyms. The reader will also find relevant figures and tables numbered sequentially throughout each chapter and then grouped at the end of the relevant chapter.  Longer versions of the (a) social network survey, (b) the demographic survey, (c) the focal participant interview protocol, (d) the health information ego network participant interview protocol, (e) the focal group interview protocol, (f) instructions for the focal participant’s health maintenance literacy practices diary entries (g) the focal participant’s human ethics consent form, and (h) the ego and expanded health information network participants’ consent form are grouped as Appendices at the end of the dissertation.         8  CHAPTER 2  THEORETICAL FRAMEWORKS  This study draws on several overarching and related theoretical frames that highlight the role of the social in human cognition (Gee, 1999) and that view literacy as meaning making (Barton & Hamilton, 1998; 2005) that occurs within socially situated contexts of social practice (Barton & Hamilton, 1998; Street, 1984).  The study also draws on social network theory that focuses on social relations and the patterns they form (Wellmann, 1988) and the ways relational patterns are embedded with symbolic meaning (Mische, 2000), which anchors the exploration of language and literacy as it unfolds in social and cultural life.  This broad theoretical perspective draws attention to the complex and permeable nature of individuals’ social worlds and allowed me to explore primarily oral interactions around health maintenance as they occurred within a set of inter-related social networks, during a year-long period in a small rural community in Western Canada.  Situated Cognition   What has been termed by James Gee (1999) as “situated meaning” refers to meaning grounded in specific contexts, constructed and used by specific sociocultural groups.  From this perspective, conceptual knowledge cannot be abstracted from the situations in which it is acquired and applied.  The situated nature of cognition can thus only be fully understood by accounting for the sociocultural resources people bring to their understanding of text (Gee, 1990; Street 1984; Purcell-Gates, 2007).  This approach to discourse and communication draws on Mikhail Bakhtin’s (1986; 1993) work, who stated that individuals “author the self” through expressing their personal understandings of their sociocultural realities, which are contingent on how the speaker or writer senses and imagines his audience to be and to whom the utterance is 9  addressed.  These socioculturally defined resources are produced, constrained, and enabled in part by people’s social conditioning and their positioning in the social fields in which they participate (see Bourdieu, 1991).  Individuals produce, use, and interact with modes of communication in different ways in different social contexts, a process always shaped by individuals’ motivations and cultural resources. For example, when a patient reads information online to learn about a particular health condition, its prevention and/or home treatment, they may construct their understanding of the content by drawing on informal advice from a friend (relational frames of knowledge) who grew up in a household where doctors were not trusted (beliefs and attitudes).  They may also integrate their own history with the respective health condition (experiences) into their knowledge constructions.  Literacy as Socially Situated  Literacy events.  Framed within a metaphor of social ecology, the literacy as social practice theoretical perspective highlights how literacy can be seen as a set of social practices that people draw on as they engage in individual literacy events.  “From this perspective, literacy is located in interactions between people, rather than being decontextualized cognitive skill – an activity, rather than just an internal attribute” (Barton, 2007, p. 52). Literacy events are considered to be observable social action transpiring around units of meaning making (Barton & Hamilton, 1998; 2005).  Literacy events are activities where literacy plays a role, often referring to written text that is central to the activity or talk around that text (Barton & Hamilton, 1998).  Barton (1994) notes that the term literacy event is derived from the sociolinguistic idea of speech events.  Bakhtin believed that central to the analysis of spoken language should be the social event of verbal interaction rather than the formal linguistic properties of text in isolation (Bakhtin, 1979; Barton & Hamilton, 1998).  Bakhtin highlighted 10  how spoken language is always situated within social processes that are shaped by individuals’ values, attitudes and beliefs: “When I speak, I also consider the apperceptive [conscious perception] context in which the person I am addressing perceives my speech, the extent to which he is informed about the situation…his views and convictions, prejudices, his sympathies and antipathies – after all, all this will affect his response of active understanding of my utterance” (Bakhtin, 1979, p. 27).  Heath (1982) further characterized a literacy event as “any occasion in which a piece of writing is integral to the nature of participants’ interactions and their interpretive process” (p. 50).  Heath’s refinement of the term literacy event was based on her ethnographic study (1983) where she carefully observed and compared the home and school language and literacy practices of two working class communities (African American and white), with mainstream middle class people in Piedmont Carolinas, USA, for nearly a decade.  Heath highlighted how the ways these communities approached acquiring, using, and valuing language were dependent on a socialization process that was grounded in cultural practices and socially established rules for verbalizing what they know from and about written material (1982; 1983).  The author remarks how “each community has rules for socially interacting and sharing knowledge in literacy events” (1982, p. 50).  Literacy practices.  Within the literacy as social practice frame, literacy events as units of analysis are further expanded to conceptualize how events are situated, and always exist in social context - literacy practices.  Street employed the phrase “literacy practices” (Street, 1984, p. 1; Street, 2000) as a means of focusing upon social practices and conceptions of reading and writing, and then later elaborating the term to encompass both literacy events (Heath, 1983) and the social models of literacy that participants bring to bear upon those events that give meaning to them (Street, 1988).  Barton and Hamilton (1998) then drew on Street’s 11  framing of literacy practices in their ethnographic study of everyday literacies in Lancaster, England.  The authors describe how literacy practices include the unobservable sociocultural contexts within which these observable literacy events occur (Barton & Hamilton, 1998).  These include intangible values, beliefs, feelings, attitudes, pressures, and social relationships, which are always constrained within relations of power (Street, 1993; Barton & Hamilton, 1998).  These power relations can originate from different institutional and local sources, such as governmental programs to reduce obesity or peers influencing each other’s health behaviours negatively.     The concept of literacy practices implies that health maintenance literacy activity is always situated within social contexts and cannot be considered context-free.  This orientation subsumes an “autonomous” model for literacy that is grounded in assumptions that literacy is independent from social context, an autonomous variable and technical skill that has predictable effects on cognition and society (Street, 1993).  Alternatively, an “ideological” model of literacy always involves a description of different literacies as they are rooted in conceptions of knowledge, identity, and being, and the way they are anchored in one’s interpretations of intersecting aspects of epistemology, power and politics (Street, 1993).  This study draws on the tenants of an ideological model for literacy by examining the ways that social networks contextualize and mediate health maintenance literacy behaviours, beliefs, values and practices, and the ways that health maintenance literacy practices are always shaped by different structures of power.   With this theoretical orientation that literacy as socially situated, this study takes a perspective that an individual engaging with health information within the social activity domain of health maintenance might be required to integrate and interpret a range of modes of 12  communication (e.g. written, spoken, visual, numerical, and so forth), all of which are filtered through a lens of cultural and conceptual meaning.  Within this study, however, I set out to collect and analyze data that consisted only of observable instances of listening, speaking, reading, and writing in the exchange of health information.  This was a deliberate, and in many ways a practical, decision to do with restricting the topic to a manageable one (see Barton, 2007).  I therefore collected data on print and oral modes of human-to-human communication as a precise starting point for gaining some understanding into the processes of meaning making around health issues and information.  I recognize, however, that one cannot isolate print and oral literacy from other modes of communication when trying to understand the full complexity of meaning making in people’s lives (Kress, 2003).   Activity Theory Activity theory (Vygotsky, 1987) also informs this research. According to activity theorist James Wertsch (1998) almost all human action is mediated action and should be considered the base unit of analysis for sociocultural researchers.  “Action may be external as well as internal, and it may be carried out by groups, both small and large, or by individuals” (Wertsch, 1998, p. 23). Wertsch describes how human activity is always mediated by cultural tools that are either material (e.g., written mode) - or immaterial (e.g. spoken mode).  Such cultural tools, that are used to mediate human activity, are used in ways that are shaped by the goals or purposes of individuals, and are often based on factors related to historical, cultural, and institutional power and authority (Wertsch, 1998).  It is therefore necessary to understand human activity by taking into account cultural, historical, and institutional contexts within which the activity occurs.  This helps us understand, for example, why certain cultural tools and not others are employed, and who decides what cultural tools should be used, and how this 13  relates to power and authority (Wertsch, 1998).  Due to the socially embedded nature of human activity, it is necessary to study literacy within sociocultural contexts, accounting for the intersections of larger structures such as political, economic, historical, religious, linguistic, and power systems.  Within this view, there are many situated literacies (e.g. school literacy, family literacy, entertainment literacy, health maintenance literacy, etc.), which can be differentiated by the domains of social activity they are embedded in (e.g. schooling, family, entertainment, health, etc.) (Vygotsky, 1987; Wertsch, 1998). Activity theory allows us to see a social activity domain as a structured, patterned context within which human activity occurs.  Human activity in the social activity domain of health maintenance is defined, for purposes of this research, as human activity around the maintenance of health (Purcell-Gates, 2013; Purcell-Gates & Perry, 2012). Health maintenance is mediated by literacy events which can include, for example, reading a prescription, filling in a patient history medical form, reading health-related magazines, interpreting bathroom signs, discussing childbirth with a friend, and so on.  Drawing on activity theory, these health maintenance literacy events would be considered cultural tools that mediate human activity around the maintenance of health (Wertsch, 1998).   The following is an everyday example where we can see that literacy is a social activity. When an individual inquires over the phone about a gym membership (observable oral literacy event) in order to enhance their physical appearance (unobservable socially influenced feelings, beliefs, values and attitudes), this person is engaging in social activity for the purposes of maintaining physical fitness. This literacy event is shaped by cultural values (being thin is attractive) and power dynamics reflective of broader institutions that drive the media and consumerist culture.  We can see in this small vignette that literacy practices within a social 14  activity domain can be conceptualized as the socially regulated things that people do with literacy, as well as the cultural meanings, motivations for use, and power dynamics that shape these practices (Street, 1993; Barton & Hamilton, 1998).  Human activity within a domain can cross physical spaces (e.g. social activity related to health can take place in a school, at home, or at a gym) and literacy events can fall under more than one domain (e.g. immunizing a child could fall under the social activity domain of health maintenance and also of parenting) (Purcell-Gates, Perry & Briseno, 2011). Social Network Analysis Theory There is an ongoing debate in the field of sociology surrounding whether or not social network analysis is a method or a theory.  Is it a cluster of techniques for analyzing the structure of social relationships, or does it constitute a broader theoretical framework or philosophical orientation of life (Mische, 2011)?  Essentially social network analysis is a blend of both analytic techniques and a theoretical orientation – it is a paradigmatic way of focusing on the characteristic patterns of relational ties between individuals in a social system, rather than on individuals, groups, attributes, or categories (Wellmann, 1988).  These descriptions are then used to study the ways relational patterns within social networks channel resources to specific locations in social structures (Tindall & Wellman, 2001), and how these social structures shape network members’ behaviors (Hall & Wellman, 1985). By analyzing how patterned relations influence social structure, social network analysis allows for comprehensive theoretical and empirical explanations into the sources of social action.     Since the 1990s some social network scholars have drawn their attention to the communicative grounding of network relations and the implications of these relations for understanding dynamic social processes. More than just a set of analytical techniques, what is 15  described as “the new relational sociology” is a new approach that focuses on the dynamic interplay of networks and culture. “These conversations sparked by this network of New York area scholars – in dialogue with a broader circle of researchers elsewhere – set the stage for the consolidation of a perspective that crossed a series of fractal divides, linking network relations with discourse, identities, and social interaction” (Mische, 2011, p. 4). During this time, for example, one of the preeminent social network analysis scholars, Harrison White (1992), shifted his focus from a mathematical approach to social network analysis to a theoretical perspective that emphasized how social ties are multiple, fluid, and narratively constructed (and reconstructed) in relation to evolving timeframes (Mische, 2011).    In this study, I apply a social network orientation to explore knowledge construction and meaning making around health issues and information in social network interactions.  To accomplish this, I draw on a mathematical social network analytic technique that gives macro level insights into the social structure of networks, as well as ethnographic qualitative analysis that gives insights into the meanings individuals attach to their relations (e.g. what different symbolic constructions people attach to their relations- such as ‘trust’ or ‘wisdom’), and how this relates to their understandings and use of health information.  This relational perspective brings a lens to human meaning making by focusing on the multiple and shifting meanings people bring to particular cultural and inter-subjective contexts (DiMaggio, 1992) where meanings are unstable and always changing (Mische, 2000).  Actor network theory.  Similarly to social network analysis theory, actor network theory is a theoretically driven approach to the analysis of networks.  Actor network differs from social network analysis theory in that it is a material-semiotic approach where human and non-human materials (e.g. artifacts) are assigned equal amounts of agency within webs or actor-16  networks (Latour, 2011; Law, 1999).  Bruno Latour, a science and technology scholar and one of the main proponents of actor network theory, describes how relations are both material and semiotic: “whenever an action is conceived as networky, it has to pay the full prize of its extension, it’s composed mainly of voids, it can be interrupted, it is fully dependent on its material conditions, it cannot just expand everywhere for free (its universality is fully local)” (2011, p. 8).    An example of actor network theory relevant to the field of literacy can be found in a study conducted by Nichols, Rowsell, Nixon and Rainbird (2012).  The authors explore how parents located in three different regions in the USA and Australia, use and access information about children's health and development.  The authors organized their analysis around four categories of social institution (1) the mall, (2) the clinic, (3) the library, and (4) the church and draw on actor network theory and material semiotics to analyze the processes through which the subject ‘early learning’ was assembled in different sites and the trajectories through which it was mobilized. In this present study, however, I purposefully draw on a social network analysis theoretical and methodological approach (as described above in the section “Social Network Analysis Theory”) that originated in the field of sociology (Tindall & Wellman, 2001; Wellmann, 1988).  This approach enabled me to focus only on human-to-human interpersonal interactions around health information as the unit of analysis of human activity (Wertsch, 1998).  By drawing on a social network analysis orientation, I was able to answer my research questions by attending to the patterns of human-to-human relations in the exchange of health information, and how meaning emerges in this interpersonal process. (Mische, 2000; 2011).      17  Critical Theory To understand the role of social networks in mediating meaning making around health information, it behoves us to look at social relations within their broader social and structural patterns.  These patterns form social worlds that are characterised by multiple memberships, unresolved boundaries, and various ways of framing knowledge and negotiating meaning making.  A critical frame draws on a range of theories of language and discourse to bring attention to the social aspects of literacy, including how some literacy practices are more dominant than others, how the meaning of literacy depends upon the political, historical, religious, and economic structures in which events are located, and the role that power plays in shaping literacy practices (Street, 1984).    This research further extends a literacy as social practice framework by integrating a critical theoretical frame, one that addresses the co-constitutive nature of power and agency Critical theory asserts, and is focused upon, the understanding that there are concealed power structures in society that need to be understood in order take action to change oppressive influences that constrain individuals’ empowerment and agency.  The lens brought to this present study - that an individual is not abstracted, isolated, independent, and unattached to the world - fits well into a broader literacy as social practice theoretical paradigm that always situates meaning making around health information in social context.  Freire’s (1970) notion that “authentic reflection considers neither abstract man nor the world without people, but people in their relations with the world” (p. 81) also mirrors a social network approach that views people and their actions as interdependent rather than independent, autonomous units.  It is in this interdependence between people that those without power can confront reality critically, simultaneously objectifying and acting upon that reality.  In the field of health 18  literacy, Nutbeam (2000) draws on Freire’s concept of critical consciousness to highlight that critical health literacy should involve reflexive investigation of “the political feasibility and organizational possibilities of various forms of action to address social, economic and environmental determinants of health” (p. 265).  In this research, I draw on Freire’s concept of a conscious being to examine how people challenge and evaluate various sources of health information critically in their day to day life.  This authentic thinking, however, is sometimes dismissed when participants enter into dialogue with health professionals whose health advice they trust unequivocally. Transformed into receiving objects, they adjust to the medical world and inhibit their own creative power, thus bringing to a halt the flow of health information. Bakhtin (1986; 1993) was seminal in identifying such "authoritative discourse," which he contends demands to be assimilated by the reader or listener.  This type of medical discourse is viewed as past, finished, hierarchically superior, and therefore demands "unconditional allegiance" rather than accepting interpretation.  Michel Foucault’s (1972; 1977) theoretical orientation is also significant to a critical theoretical perspective because his perspective emphasizes the ways in which social practices are structured and regulated through configurations of both relational and institutional power and knowledge.  Such a perspective opens potentials to map the patterns of how interactions around health information are distributed and organized, as people participate in different informal relations with each other and enact different identities (Barton & Hamilton, 1998).  For example, one powerful form of patterning is through gender, and many interactions around health information are gendered.  Gendered patterns in interactions around health information might be visible in how a mother talks about sex education to her daughter, and not her son, or in how men exchange information about screening for prostate cancer.   19  In applying a critical theoretical perspective, we can also better observe the interplay of dominant discourses of literacy with vernacular - or local - forms of knowledge, particularly when we study the use of literacy in real life contexts (see Street, 1984; Barton & Hamilton, 1998).  Furthermore, under a critical framework, studies can be contextualized to account for the internalization of power dimensions by exploring how information is encoded and meaning constructed through different modes of communication (e.g., tone of voice, pictures, graphs, numbers, body language, etc.); connected with aspects of local and global levels of social structure, and the role that institutions play in this process (Street, 1984; Brandt & Clinton, 2002).     It was Foucault (1982) who stated, “the fundamental point of anchorage of power relations, even if they are embodied and crystallized in an institution, is to be found outside the institution” (p. 222).  Relationships are more than symbolic interactions (i.e. relations of communication), but also relations of symbolic power, beyond linguistic exchanges (Bourdieu, 1991).  These intricacies of symbolic power are imparted within the literacies of an institution, for example, which are distributed and then mobilized through the unpredictable ways they are taken up in different social landscapes.  Critically analyzing the role of power can help us see how health information materials originating in distant institutions, for example, are locally appropriated within different social settings, and how such phenomena is contested and shaped through various relations of socially situated cultural, economic, and political power.  An example can be found in how health curriculum created at the World Health Organization (global) is imported into a resource-poor nation where it is resisted because the local knowledge clashes with that of the distant organization (Higgins, 2010).  “Each recipient helps to produce the message which she perceives and appreciates by bringing to it everything that makes up her 20  singular and collective experience” (Bourdieu, 1991, p. 39).  In an instance in Tanzania, it is apparent how audiences resist and challenge the global viewpoints embedded in WHO health messages that are delivered to local audiences through talk by local educators.  In order to successfully balance competing worldviews, some educators creatively reconfigure the message by localizing the information, and in doing so they engage the audience (Higgins, 2010).  Summary of Theoretical Frameworks    Drawing on the overarching related frames described above, we are able to view health maintenance literacy as an instance of literacy as social practice (Barton & Hamilton, 1998; Street, 1984), where human activity unfolds around the maintenance of health in the social activity domain of health maintenance (Purcell-Gates et al., 2011).  This frame also brings attention to the relationship between interactions around health information and social network activity - composed of relational patterns embedded with symbolic meaning (Mische, 2000). This perspective emphasizes the role of power in the social sphere and how power is reified in social interactions; enabling or constraining the flow of health information through social networks. This broad theoretical perspective, also allowed me to explore how individuals socially construct meaning through health information and what they do with this information, while considering how all dimensions are engaged in a delicate interplay of societal and cultural forces that are shaped by different gradients of power relations.         21  CHAPTER 3  REVIEW OF RESEARCH  The goal of this dissertation was to explore how social network interactions mediate the meaning of health information within the social activity domain of health maintenance.  This perspective posits health maintenance literacy, as I have defined it for this study, as social practice and, thus, always embedded in, and shaped by, the sociocultural contexts within which the meaning making activity occurs.  The two results chapters that constitute the center of this dissertation explore this theoretical stance. The research reviewed below provides empirical descriptions of, first, literacy as socially situated, and second, of instances of meaning making around health information that were captured by researchers working from a literacy as socially situated perspective.  It also describes research that brings a critical perspective to health advocacy and empowerment, as well as research that explores the role of social networks in literacy. Social Aspects of Literacy   For the past several decades there has been ground-breaking work that untangles and reveals the intricacies of the social, historical and cross-cultural dimensions of literacy.  The following empirical studies are examples of such studies that make visible the complex ways that communities construct and practice literacy.  Although these studies did not explicitly focus on the role of social networks in mediating health maintenance literacy, they did provide descriptions of literacy in practice: what literacy activities individuals engage in, for what purposes and functions, and the relationship of engagement with literacy to social practices.  Ethnographic research conducted in various countries (e.g. Barton & Hamilton, 1998, Gregory & Williams, 2000, and Pahl, 2002, in the UK; Heath, 1983, and Sarroub, 2002, in the United 22  States; Horsman, 1990, in Canada; Mazak, 2007, in Puerto Rico; Molosiwa, 2007, in Botswana; Prinsloo & Breier, 1996, in South Africa; Purcell-Gates, 2006, in Costa Rica; Robinson-Pant, 2000, in Nepal; Scribner & Cole, 1981, in West Africa; Street, 1984, in Iran; and Yates, 1994, in Ghana) has led to meaningful insights into what people do with literacy for different social purposes in different sociocultural contexts.  These studies have provided us with a deeper appreciation and understanding of literacy by situating it as practice within the sociocultural context within which it occurs, while also highlighting the agentive nature of individuals as they consolidate dominant literacies with localized meanings and practices.  The following studies exemplify this perspective on literacy as social practice.   Meaning making in the home: Texts and literacy practices in families.  Pahl’s (2002) ethnographic study of three low-income families in the UK illustrates how meaning-making in the home is profoundly shaped by family narratives that are played out.  The author describes how in focusing on what she calls the “in between space” - meaning one’s social conditioning (Bourdieu, 1991) - and how this is played out and transformed, aspects of the complexity of the process of meaning making can be understood.  In one household, Pahl found that a child responded to the family narrative related to a great grandfather’s involvement in the Indian railways by drawing a train and attributing importance to the image.  The author describes how, in general, traces of the child’s intimate relationship with the family stories and self-representation can be seen in the multimodal texts they produce.  By accounting for the presence of family structure, and family narratives in the process of meaning making, Pahl offers insights into the ways that home is structured, and the cultural resources drawn upon in home literacy practices (Gee, 1999).  Pahl’s study is rich in connotations of how meaning making transpires in highly localized cultural and social contexts (Barton & Hamilton 1998).  23  Social Aspects of Meaning Making around Health Information   In addition to the myriad of studies of literacy (in general, i.e. across multiple social activity domains), a small, but fascinating body of research adds depth to the broader concept of literacy practices by documenting observations of local meanings of health, and the multiple ways that health information is woven throughout people’s day to day lives in different sociocultural contexts.  These studies do not explicitly attend to the ways that chains of social interactions and layers of intersecting institutional and interpersonal power dynamics mediate and contextualize meaning making within the social activity domain of health maintenance. They are informative, however, in that they offer insights into ways people understand and use health information as being nested in social and cultural activity. The following studies exemplify this body of research.  Family planning in Nepal.  Robinson-Pant’s (2001) ethnography describes a complex picture of how the meanings of health are not always neatly nestled in various settings in Nepal. Robinson-Pant describes the “gendering” of literacy practices (Rockhill, 1993), which differs greatly between and within areas in Nepal.  In one research site, the women scored high on assessments related to information about the use of contraceptives that had been taught to the women at a community health center.  However, the information was internalized in complex ways due to cultural attitudes and pressures related to family planning.  Due to husbands’ or in laws’ opposition to family planning – and the low value attached to the birth of a girl – the women were often pressured to keep trying for a son.  Decision making around family planning proved to be much more complex than a woman persuading her husband to see the benefit of a small family, as was assumed by the creator of the literacy primer in a distant American aid agency.  Robinson-Pant found that health knowledge was not the key factor related to the 24  women deciding to adopt new health practices, but rather was related to the broader context of power relations, economic concerns, and social structures.  The women’s health-related attitudes and behaviour towards family planning were thus shaped by social and structural constraints, such as a complex network of decision makers in an extended family, economic concerns (e.g. that daughters take away money in dowry), poor health services, and inadequate family counselling.   This study stressed the significance of the socialization process in the construction of the meaning of making around health information and the social institutions through which this process takes place (Street, 1984).  It highlighted the ways in which the women interacted with health information as part of social practices, affecting the nature of the health information being processed and internalized.  It also revealed the ways that social position is embedded in both familial and institutional power relations (Street, 2001).  HIV/AIDS education.  While studies that focus on literacy within the social activity domain of health maintenance are relatively few in number, there is a growing amount of HIV/AIDS research that focuses on the way meaning making is constructed in language and multimodal semiotic systems (e.g. Drescher, 2007; Mitchell, 2006; Mitchell & Smith, 2003; Mutonyi & Kendrick, 2011; Norton & Mutonyi, 2010).  These studies highlight differing world-views and perspectives at the levels of institutional structures, and in the form of cultural practices (Higgins & Norton, 2011).    Situated in Tanzania, Higgins’ (2010) research analysed a non-governmental organization’s implementation of the World Health Organization’s Life Skills Education (LSE) curriculum involving a set of ten skills that was designed to promote positive behaviour change.  The author drew on the concept of multiliteracies (Cope & Kalantzis, 2000) to highlight the 25  diversity of meaning making in different cultural and social contexts, and to bring attention to multimodal aspects of communication.  Higgins proceeds by analysing the contrasting cultural models – the concept that the human mind stays close to the experiences from which meaning is extracted (Gee, 1999) - that are articulated in the health education sessions.  The author found that LSE concepts, which are built on a rationalist framework, assume that knowledge leads to empowerment and excludes the lived, local experience of Tanzanian people from educational sessions.  In instances where the educators could not reformulate the materials based on the participants’ local situated meanings (Gee, 1999), the LSE message failed to get across to the audience.  This problem is particularly made clear in an instance where health educators presented a definition of empathy from the health training material. The notion of empathy was rejected by the audience because of the harsh realities of their daily lives that make empathetic problem solving challenging.  The reaction of the audience led the educator to reframe the concept of empathy in a more locally relevant way by providing the example of paying for another person on a bus, a common practice in Tanzania and one that is economically feasible (Higgins, 2010).  By relating western constructed discourses to a common social practice of the Tanzanian people, the author found that local educators experienced greater tolerance for their global health message.  This study highlights how health information is shaped by the goals and purposes of the audience (Wertsch, 1998), and links to Foucault’s (1972; 1977), work in that it addresses the need to situate literacy within the social, historical, political, and economic contexts in which it occurs.  Evidence of meaning making around health information embedded in literacy studies.  Observations of meaning making around health information are also documented within some bodies of ethnographic research that provide detailed descriptions of people’s use 26  of reading and writing in diverse community settings, (e.g. Barton & Hamilton, 1998; Horsman, 1990; Maddox, 2005; Kell, 1994; Purcell-Gates et al., 2011; Wagar-Wright, 2001).  These data provide additional observations of meaning making around health information as it appears within sociocultural contexts.  Barton and Hamilton (1998), in their ethnographic study which documents in detail literacy practices in Lancaster (a town in north-west England), described, for example, how they observed people become the experts in the treatment and understanding of particular health ailments.  The authors noted that people develop expertise in relation to illness in a way that is extensive, such as how to recognize symptoms, the effects of medication and other therapies, medical and institutional procedures, medical vocabulary, procedures for receiving health benefits, and so on.  Barton and Hamilton point out that what is recognized as local expertise – or vernacular knowledge – may be subject to different standards in terms of what is recognized in the professional realm, and the ways that institutions privilege and value certain knowledge bases (Foucault, 1972; 1977).  The authors also focused on how individuals assert themselves by consulting, for example, with medical texts - normally a resource privy to professionals – in order to confront or challenge professional experts.  In doing so, according to Barton and Hamilton, they redefine relationships and reconfigure relational and institutional power dynamics by using literacy in an empowering way.   Another study that makes a similar point can be found within Horsman’s (1990) work that challenges stereotypes of illiteracy by listening to women's accounts of their own lives. Horsman explored stories of women living in a rural area of Nova Scotia, Canada, and set out to discover the ways that the women enter into and resist dominant discourses.  The author describes how the context of women’s extreme isolation - combined with other relational 27  factors such as abusive marriages and childhoods - results in the women experiencing depression.  In order to cope with depression, and other symptoms of stress, the women seek help from their physicians, describing themselves as unable to cope and “having trouble with their nerves”.  The women, however, are frequently unable to get any other support from the physician other than a high dosage of anti-depressants.  The author suggests that depression in women is perhaps the only acceptable way for them to portray that they are unhappy with the condition of their lives.  Physicians themselves are caught in limitations of the system; they cannot change the conditions of the women’s lives, and they therefore treat the women through drugs so the women can accommodate the conditions of their lives, and accept the status quo.  Many of the women described how difficult it was to deal with everyday life, let alone participate in a literacy program while on anti-depressants.  In Horsman’s study, there are several other examples of the ways dominant medical discourses sustain the status quo, and also implicitly locate the blame for inequalities in the women.    Within the study, however, there are several examples of how dominant medical discourses (Foucault, 1982) offer possibilities for agency and resistance.  In one case, a participant described asking for a prescription for a sleeping aid from her physician because she was struggling to raise her daughter alone, but was ignored and instead prescribed a variety of anti-depressants.  She eventually stopped taking the anti-depressants, and discovered through eating well, and quitting smoking that she was able to improve her emotional health.  In another particularly poignant statement, a woman who had been institutionalized for mental illness describes how she had to “learn power”: “You weren’t asked, you were told, and I had forgotten – I had to learn power, I had rights” (Horsman, 1990, p. 79).  This study highlights how the interplay of dominant discourses of meaning making around health information  with 28  local forms of knowledge become visible when we study the uses of situated literacies in real life contexts (Street, 1984; Barton & Hamilton, 1998).  This theme is further explored within this dissertation study of social networks and health maintenance literacy, particularly in the second analysis, presented in Chapter Six.  A Critical Perspective: Health Advocacy and Empowerment   Also relevant to this current study, is the work of Nutbeam (2000) who has been instrumental in broadening the concept of Health Literacy (referring to field of research and practice in public health and medicine – see operational definitions) to include aspects of empowerment and agency. He presented three different conceptual categories for health literacy that are distinguished among: (1) functional health literacy, (2) interactive health literacy, and (c) critical health literacy.  Functional health literacy is described as involving the ability to apply basic literacy skills in reading and writing in everyday health decision making. Interactive health literacy involves the ability to apply more advanced cognitive and literacy skills to independently obtain relevant health information, derive meaning, and apply information to personal and family health circumstances.  Critical health literacy involves the ability to apply more advanced cognitive and literacy skills to the critical analysis of health related information. It includes both aspects of functional and interactive health literacy, but addresses a need for personal and community empowerment through improved capacities to act on a broad range of health determinants, both personal and social (Nutbeam, 2000; 2010).  This present study and analysis draws on Nutbeam’s concepts of critical health literacy, as well as a broad definition for health advocacy as “the ability to advocate for personal, family and community health” (Tappe & Galer-Unit, 2001, p. 477).  This definition for health advocacy was refined as I went through the data to mean “an individual orally asserting rights or opinions related to promoting 29  health and wellbeing, and involves speaking out against a situation or person that has more power than the individual.”   Nutbeam’s (2000) concept of critical health literacy can be traced to the underpinnings of Freire’s (1970) seminal work where people are encouraged to develop their abilities to perceive critically the ways they are situated within their worlds and to trust that their realities are in transformation, i.e. not determined static entities.  Individuals are thus capable of thinking through possible actions and action consequences in order to choose how to act; monitoring streams of action according to their values, norms, and desired identities (Carspecken, 1996).  These conscious agentive actions may take a variety of forms, including appropriation of some dominant discourses and practices, and many forms of resistance against those practices or discourses (Perry & Purcell-Gates, 2005).  Agency can thus be considered the strategic making and remaking of selves, identifies, activities, relationships, cultural tools and resources, and histories, as embedded in relations of power (Lewis, Enciso & Moje, 2007).   It is essential that agency not be conceptualized as an isolated action (e.g. advocating independently for one’s health or the health of others), but involves mutually constitutive roles of human agency and sociocultural context (Moll & Rubinstein-Avila, 2007).  How agency plays out and takes form is dependent on a chain of social interactions that are always embedded in power relations.  The concept of critical health literacy and agency sets a foundation for framing the data in this study and analysis that describes individuals’ critical analyses of health information and capacity to advocate for health, while considering the overlapping structural and relational barriers to health advocacy.    Anchoring this study within the principles of critical health literacy and agency, I drew on research garnered from how meaning making around health information is embedded in both 30  interpersonal and institutional relations of power.  Studies that explicitly focus on the role of power and agency meaning making around health information are few.  This study was designed to focus on the ways that power and agency manifest themselves in social network interactions, and how this channels the flow of information in interconnected social relations.  The Role of Social Networks in Literacy   Relevant to an in depth exploration of the role of social networks in mediating interactions around health information are some descriptions of the significance of networks in the study of literacy, which can be found, for example, in the work of Barton and Hamilton (1998), Brandt (2001), Fingeret (1983), Lytle (2001), and Ziegahn (1991).  The strength of the concept of a network is that it provides a simple way of shifting our focus beyond the individual and individual encounters, towards one that shows how literacy links across people and localities.  Networks can involve coercion and exclusion; they can be normative, controlling and constraining, as well as be supportive (Barton & Hamilton, 1998).  Adults who struggle with literacy and their social networks.  Fingeret’s (1983) study explores the role of social networks in the lives of 43 adults who struggle with literacy living in a medium sized northeastern urban setting.  The author focuses in particular on the different roles people take within such networks that are often characterized by reciprocal exchange.  Fingeret found that although the participants struggle with literacy, they often created and maintained social networks characterized by reciprocity.  Exchanges of resources involved them contributing a range of skills and knowledge other than reading and writing to their networks. “When reading is one of the many skills or services offered in the reciprocal exchange relationship, illiteracy ceases to define dependency when illiterate adults offer different, but equally valued, skills or services in exchange” (p. 142).   31   Fingeret (1983) describes how social networks are related to the extent to which those who struggle with literacy exist in different social locations, which ranges from extensive (for “cosmopolitans”), to minimal (for “local”) adults.  According to Fingeret an individual living in the “cosmopolitan” social world works in public roles, passes as literate daily, and is comfortable with the expectations and institutions of the larger literate society.  This person’s network is characterized as heterogeneous and includes network members who are literate professionals (e.g. lawyers, nurses, doctors, teachers, etc.).  Often individuals in “cosmopolitan” social worlds are engaged in relationships described as being mutual (i.e. in exchange for help with reading and writing they provide a service, such as driving a truck, working as a mechanic, or assisting day care teachers or nurses).   On the other hand, Fingeret (1983) describes how “illiterate” adults who have a more homogeneous social world are described as existing in a “local” social location.  These individuals’ social networks consist mostly of kin, but also include co-workers and friends, and are typified as having mostly members who also struggle with literacy.  Often unskilled or semiskilled laborers, their job requires no literacy skills, and they rarely have to communicate with cosmopolitan literate adults except perhaps a foreman or shift supervisor.  Some of these individuals are independent, in other words they have strong inner social networks typified by mutual exchange relations (e.g. exchanging a skill like fixing things for help with literacy tasks).  Other “local illiterate” adults, however, are embedded in networks that are asymmetrical where there is no reciprocal exchange and they are dependent on others for reading and writing tasks required of larger society.   Based on her findings that highlight the dynamic sociocultural environments in which adults who struggle with literacy are involved, Fingeret (1983) suggests that adult literacy 32  programs and instructional design must expand to embrace adults who struggle with literacy as individuals-in-networks, and an appreciation of networks as sources of strength rather than interference.  “Educators have to recognize that existing social groups will continue to be of primary importance in the lives of illiterate adults; if we do not learn to work with them, many illiterate adults will continue to refuse to work with us” (p. 144). Rural Communities   This study was located in a small Canadian rural community whose demographic is characterized as being largely low-SES – a demographic that does not adequately describe all of the members of the health information social network that formed the boundaries of this ethnography.  However, the issues related to living in a rural community provide important socioeconomic contexts for the focal participant in the study and many of the members of his health information social network.  People living in Canadian rural communities have poorer health status and greater needs for primary health care, yet they are not as well served and experience more difficulty accessing health care services and information than people do in urban centers (Romanow, 2002; Wathen & Harris, 2007).  Compared to their urban residents, rural Canadians also have increased levels of poverty, higher unemployment, shorter life expectancy and a higher infant mortality rate than their urban residents (Bavington, 1994).  Relevant to this study is the meaning of the definition of being healthy for rural Canadians.  In an ethnographic study conducted in rural western Canada, participants asserted that being healthy meant the physical, mental, social and spiritual aspects of a person.  Of importance to participants was a sense of balance and big picture thinking, which they felt was accomplished though motivating themselves, taking time for family and friends, respecting persons and nature, and so forth (Thomlinson, McDonagh, Crooks & Lees, 2004).  The health values, 33  beliefs and practices of Canadian rural residents, as well as the issues related to living in a Canadian rural community help to contextualize the present study. Summary of Review of Research   The studies described above were foundational to my focus on the role of social networks and meaning making around health information.  The present study builds on these studies and explores through ethnographic and social network analysis the ways social network interactions mediate the meaning of health information within the social activity domain of health maintenance.  The following research contributes to the strand of research that grounds itself in an interface of power processes and local practices, attending to the meanings and uses of health information as they are mediated by social network interactions.              34  CHAPTER 4 METHODOLOGY Research Design  Ethnographic research design.  Because this study seeks to explore multiple layers of meaning making around health information as it unfolds in different socio-cultural contexts, methodologies that take this interactive process out of its contexts of use are not appropriate (Barton & Hamilton, 1998).  Ethnography is a suitable overarching research design for this study because it emphasizes first hand field of study, and is designed to examine shared patterns of behaviour, belief, and language (Creswell, 1998).  This study employed an ethnographic research design using a social network analysis orientation to explore how health maintenance literacy occurs within dynamic sociocultural systems within a specific domain of human activity - health maintenance (Vygotsky, 1987; Wertsch, 1998).  It is important to clarify that this is an ethnography of a limited set of cultural practices (Barton & Hamilton, 1998), those that focus only on health maintenance literacy.  This mirrors the approach used by Barton and Hamilton (1998) in their ethnographic study of literacy practices in a town in north-west England.  The authors describe how in traditional terms it may be more accurate to say that they utilised ethnographic methods or that they took an ethnographic approach, rather than to say it is a full ethnography of the whole of people’s lives (see also Green & Bloome, 1996).   Within an ethnographic tradition, the researcher is considered part of the data and the analysis is often considered interpretive (Erickson, 1986).  I align with an ethnographic approach that believes that negotiated meaning cannot occur unless the researcher is a participant in the process.  In other words, I participated in the lives of research participants in order to observe social dialogue and interactions, and the process of creating constructs, ideas, 35  and meanings (LeCompte & Schensul, 1999b).  In writing up this study, I draw upon an interpretive paradigm and stay close to local meanings and present stories told in the voices of many different people or constituencies.  This written interpretation is therefore dialogical – it is a text where the voices of the other, alongside my own voice as the author, presented in the first person, come alive and interact with one another (Denzin, 1997).   Social network analysis orientation.  In this study, I use a social network analysis orientation to investigate patterns of relationships that connect participants to their social systems, and how these patterns channel resources to specific locations in social structures (Tindall & Wellman, 2001).  Social relations influence individual’s beliefs, perceptions, values, behaviours, and so forth in ways not simply reducible to static individual’s characteristics.  This is apparent, for example, in the study set in Nepal (Robinson-Pant’s (2001) - described in the review of research - where the broader context of power relations, economic concerns, and social structural configurations were found to be powerful influences on women’s attitudes, perceptions and behaviours associated with health practices.  Using this orientation, social networks are viewed as dynamic processes, continually morphing through various interactions among their constituent people, groups or organizations (Knoke & Yang, 2008).  Using a social network analysis orientation, my goal is to focus on relational forms, rather than on individual level characteristics, that mediate health maintenance literacy events within the social activity domain of health maintenance.  The nature of these formations might include friendships, resource flows, information flows, exchanges of social support, or other possible connections between the participants (Wasserman & Faust, 1994).  An ethnographic exploration, using a social network analysis orientation, might also reveal how a participant’s experience, self-activity, and agency are a response to social interactions.  For example, health 36  information can be used agentively by people to resolve problems related to health; often this involves challenging professional experts and specialized systems of knowledge - thereby becoming experts in the social activity domain of health maintenance and a resource for social network members.  Different kinds of networks exist in people’s lives, with some being more public, official, and structured than the more private or informal every day networks (Barton & Hamilton, 1998; Barton, 2007).  Within these networks people take on specific roles and assert a range of identities as they participate in different health maintenance literacy events - drawing on social networks, for example, to help them with particular health maintenance literacy needs.   In this study, I use a social network analysis orientation to support my broad theoretical perspective, which is that the meaning of health maintenance literacy is located in the interactions between people.  This orientation allows me to instantiate this theoretical perspective by mapping and interpreting patterns of social interrelations amongst my participants, and understanding the types of macro structures in which they are embedded.  With this orientation I did not take a formal social network analysis approach that uses mathematics and graphs in representing social network data (Hanneman & Riddle, 2005).  My interest in using a social network analysis orientation was to define the social network (i.e. map who was in the network using sociograms) and then include these individuals as participants in the study.  In order to answer my research questions, I then triangulated the social network data with the ethnographic qualitative data to explore the texture of social network patterns of knowledge construction around health information and the way this process is shaped through different instantiations of power dynamics. Using a social network analytic orientation alongside an ethnographic research design promises some new insights in terms of 37  understanding complex influences of social relations and processes and how these mediate meaning making within the social activity domain of health maintenance. Research Site Milltown.  The study took place in Milltown which is a rural town located about a two-hour drive inland from a major coastal city in western Canada.  Much of the region is made up of rich and fertile alluvial floodplains of one of the major rivers in the province.  Surrounded by towering mountain ranges, dense forests, and alpine meadows, Milltown is situated in a physically beautiful area that consists of five small regional farming and agricultural communities.  The residents of the community suffer from several related health issues. According to the Fraser Health Population and Public Health Profile (2010), half of the residents are overweight, and about 17% smoke.  Compared to provincial averages, individuals in this community have a higher prevalence rate for a number of chronic diseases, including asthma, COPD, cardiovascular disease, and depression/anxiety.  In addition, the mean family income is reported to be almost $14,000 below the provincial average.  With a small population of 8000 residents, social networks in Milltown are cohesive, according to my observations, providing a window into the ways health information flows and is architectured within overlapping social spaces.  I chose to explore the relational patterns that exist in the social ecology of Milltown in order to give depth to the intersection of social networks and meaning making within the social activity domain of health maintenance.  I anticipated that the geographically isolated nature of the area may provide a dense illustration of the unfolding of both relational and institutional power, and how this shapes - and is shaped - by the complex structures of social context.   38   In this study, the focal participant resided in the community of Milltown and reflected the community norm characterized by low SES.  The focal participant was embedded, however, in a health information social network that included individuals with different education levels, income levels, and occupations, some of whom resided within the community and others who were dispersed throughout the province and country.  Thus, although the study was situated in the low SES rural community of Milltown, the social network orientation highlights how we cannot always simplify or generalize the networks of individuals living in a low SES rural community (or in any type of community).  Clearly, social networks can expand beyond local communities, and include individuals who do not reflect one’s own education level, income level or occupation.  The Canadian health care system.  The Canadian health care system provides universal coverage for medically necessary health care services (e.g. primary care physicians and hospitals), which is determined on the basis of need, instead of the ability to pay (Health Canada, 2014).  Many services, however, such as dental services, optometrists, chiropractic services, and prescription medications are not covered in the universal health care plan. As a result, some companies offer employee benefit packages that include private health insurance plans that include such services.  Alternatively, Canadians can also purchase their own health insurance packages from private insurance providers to supplement their universal coverage (Canadian Health Care, 2007).  This brief background on the Canadian health care system contextualizes this study as some participants describe accessing (or not accessing) health care services that are not funded by the Canadian universal health care coverage (e.g. dental care, physiotherapy, naturopathy, osteopathy, etc.).  39  Researcher Location  Because this ethnographic research is essentially interpretive, it is essential that I locate myself for readers, describing my personal perspectives, histories and experiences relevant to the study.  In this study I carefully traced the strands of interactions around health information in a rural community in Western Canada.  This type of research was about contextualizing, exploring what people do with health information, identifying tensions between local and institutional health maintenance literacy practices, clarifying the role of relational power in people’s lives, understanding how sociocultural networks are working.  I believe I was well situated to take up the role as ethnographer in this study because I had some insights into the community that I was working with.  Having grown up on an island off the west coast, I bring an intimate perspective about life in general in Western Canada.   I grew up in a small coastal city on an island – just a ferry ride away from the mainland where this study took place.  Shortly after finishing high school, I moved to a smaller more rural island with a population of 5000 people.  For several years I was very involved in the community, working in the local art gallery, playing on sports teams, and hosting many potlucks.  I also started the first woman’s support group with my sister to alleviate some of the feelings of isolation associated with rural living.  I then spent many years living around the world, teaching adult education in Ecuador, Italy, and the Middle East, often living in mid-sized, more culturally traditional cities.  Returning home from my travels, I became interested in the area of health and literacy, focusing my Masters research on a participatory educational approach directed at new immigrants and refugees who struggled to access health information due to language barriers.  40  My life long memories, perceptions, attitudes, and interpretations are internalized in a gradual process of inculcation, and inextricably connected to the sociocultural norms of Western Canada (Bourdieu, 1991).  My familiarity with the socio-cultural norms of Western Canadian life was an asset for understanding and relating to people in this study.  However, I came to learn that it is challenging to perceive “culture” when you are a part of that culture, i.e. the difficulty of the fish seeing the water (Nanda & Warms, 2007).  I sought to resolve tensions that may have arisen from my gaze on the familiar by being reflexive throughout the study. Reflexivity.  I was reflexive in this study and considered how the creation of knowledge, produced through the culture I am observing, is linked to my positioning in the social field, including my history, gender, and socio-economic status (Bourdieu, 1991).  As an ethnographer, I was able to make the familiar strange by looking at social life from new perspectives, and shift my perceptions about things I have taken for granted for many years. One way I did this was I often accounted for my gender as a female and worldview in my interpretations of the male focal participant’s behaviors and practices.  I was aware that the focal participant brought an alternative perspective to relationships (i.e. non-committal) that brought me some discomfort compared to my own personal standpoint.  I captured these thoughts and interpretations through journaling at end of each day I spent in the field.  It was in my being reflexive of how my assumptions and perspectives shaped my interpretations of the everyday social life I was observing, that the validity of this research was enhanced (Davies, 2008).   Researcher Role   I took the role of participant observer for this study. I sought to become a part of the participants’ lives at the same time as I needed to ensure I had regular time to withdraw from 41  participation in order to write up field notes on what I had been observing (Purcell-Gates, 2004).  I also sought ways to contribute to the community and help out where I could as a way to reciprocate. My participant role during my year in the field had different layers of interaction. At the community level, my role was that of a volunteer, which helped me become a part of the community. I volunteered at the bookstore/literacy centre, homeless shelter, Literacy in the Park Day, Milltown Historical Day, and Saturday farmer’s market.  I also attended monthly community health meetings at the hospital.  I eventually chose to spend most of my time volunteering at the bookstore as it attracted a range of locals and gave me a chance to chat with people informally on a regular basis.  I also participated on personal levels as I interacted as a researcher and as a friend with different members of the health information social network. Entry Procedures  I initiated access to the community by first contacting the director of Milltown’s Social Health Center and explaining the research study.  We met over lunch, and I asked her about ways to become involved in the community, and to gain access to participants.  I put up recruitment posters in shops, restaurants, the doctor’s office, and so on.  In the end, I established a working relationship with the bookstore manager who became my focal participant.   Acting as the focal participant’s “shadow” over a one year period, I tagged along with him to work, family gatherings, hikes, swims in the lake, weekly board game nights with his friends, dinners and social events with his girlfriend and her friends, sporting activities, and day to day activities like grocery shopping, preparing meals, and watching TV.  I also anticipated that because of aspects of my background, and our similar age, individuals in his social world might be comfortable with me, trust me, and let me into their lives in meaningful and real ways. As I slowly branched out and spent time with those in the focal participant’s health information 42  network, I also requested an interview with each person individually over coffee or lunch.  My goal was to have a friendly and supportive presence, and I made an effort to help out when it was needed, such as making meals, helping out with groceries, and helping out when somebody was sick.  Immersing myself in the focal participant’s life and his various health information networks helped me move from surface level researcher-participant interactions to more authentic, person-person, ways of relating.    Participants  Herbert (all names are pseudonyms) was the focal participant for this study.  Using social network sampling techniques (Wasserman & Faust, 1994), Herbert identified nine individuals in his health information network with whom he shared and from whom he received health information.  Out of these nine people in Herbert’s health information network seven (see Table 4.1 for description of these participants’ consent) then each filled out a social network survey and identified on average eight people with whom they shared and received health information.   Focal participant.  Herbert was a 27-year-old single white male who volunteered at the bookstore full time, and lived off of unemployment insurance.  He grew up in a small rural community in Eastern Canada, and at the time of this study had lived in the community of Milltown for approximately four years.  His mother was a zookeeper and his father a traveling preacher.  Herbert attended a Bible College after he finished high school, but dropped out one year before graduation due to a lack of interest.  He reported that he rarely saw a doctor, and refused to see a dentist despite his decaying teeth.  At the time of this study, Herbert reported that he read a lot of literature (one book per week), and often took free online courses in philosophy from open access universities.  Those in his health information network used the 43  following adjectives to describe him: bright, funny, a good guy, mature, confident, self-aware, stubborn, set in his ways, easy going, well-read, independent, philosophical, and eccentric.   Herbert was slim and had short hair, many freckles, and a beard.  He wore black rimmed glasses, sometimes painted his toe nails colourfully, and wore t-shirts with witty slogans written on them.  Herbert lived in a small one-bedroom apartment in Milltown that he decorated with framed drawings, small trinkets (like miniature owls), and postcards and pictures of family and friends that he placed on the walls and on his refrigerator.  Hebert had a record player and an impressive collection of records, along with a collection of books and cookbooks.  His furniture was all from second hand stores, and in his living room he had a TV, a large couch, and two cozy chairs that he covered with knitted blankets.  Aside from the bed in his bedroom, he had a bed set up on his balcony where he told me he often enjoyed sleeping outside, appearing not to be bothered that a noisy train would frequently pass by in front of his place.  Herbert had two cats, one which would playfully crawl up Herbert’s leg finding his way to his shoulder, and then sit perched watching Herbert while he would cook meals.  Herbert had more female friends than male ones.  He described himself as liking art, music and literature, and he appeared comfortable talking about his feelings.  Herbert also embodied many personal tensions: wanting an intimate relationship, yet pulling away from them; rejecting consumerist culture and a nine to five job, yet desiring financial stability and professional meaning.  One of his best friends described his personal tensions well when she said, “He is always searching for these intense connections.  But he is resisting the things that would make them long term.”  When I met Herbert he was at an important transition point in his personal life, which played out throughout the course of the year.  For example, about half way through the study, Herbert began a serious relationship with a woman he met on an online 44  dating website, and near the end of the study started making plans to purchase the bookstore where he was working as a volunteer manager.     Herbert’s health information ego network.  The smallest unit of analysis in a social network is an individual in his/her social setting, called an “ego” network (Daly, 2010).  Using an egocentric approach, I asked the focal participant Herbert - i.e. the individual ego - to provide the names and characteristics of the people in his health information network, along with details of his relationship with each person (Daly, 2010).  To obtain the names of members of his health information network, I asked Herbert to fill out a social network survey where he listed those with whom he shares health information and from whom he receives health information.  This social network survey also asked for details about the respondents listed and information about their relationship (e.g. relationship to respondent, his/her occupation, how often they see each other, etc.) (see Appendix A for complete social network survey).  The nine individuals in Herbert’s health information ego network, as depicted in Figure 4.1, were all English speaking Caucasians, and represented a wide range of ages, levels of education, levels of income, and religious backgrounds, as described in Table 4.2.  In the following, I describe the eight individuals from Herbert’s health information ego network who consented to being both interviewed and observed (see Table 4.1 for description of these participants’ consent).   Daniel.  Daniel was a 26 year old male who had a MSc in environmental chemistry.  He worked as an environmental chemist in a major city two hours west of Milltown.  He was Herbert’s younger brother, and they were in frequent contact due to their proximity (they live 2 hours apart), and familial ties.  Daniel had been in a common-law relationship with his girlfriend Kalie for around five years, and together they had a combined annual household income of $80,000.  Through his work he had extended health benefits, which he drew on 45  regularly due to his colitis; a chronic inflammation of the colon.  Daniel had a high stress job, and sometimes worked 13 days straight with no days of rest.  Daniel had short dark hair and often wore casual clothes like t-shirts and jeans. He appeared to have a stable life with a steady job and a long-term girlfriend.  Compared to Herbert he was more reserved in terms of how he shared his feelings with me.  I observed how he would often stop in mid-sentence when talking to me, taking his time to collect thoughts and then carefully describe them to me in a measured way.  Despite Daniel’s reticent nature, he seemed to enjoy talking at length - with one interview between us lasting close to two hours.  In his time talking to me, I noted how he was forthcoming and insightful about the struggles he had managing his chronic condition.  Daniel appeared to approach his life in a cautious way, often perplexed, for example, how his brother Herbert would enter into relationships without trepidation and seemed to live comfortably despite his debt and lack of stable income and employment.  Jeremiah.  Jeremiah was a 23-year-old male, and the youngest brother of Herbert. He lived in a small city about an hour from Milltown, and saw his brothers Daniel and Herbert every few weeks.  He had recently married and had a combined annual household income with his wife of $45,000.  Jeremiah had a high school level education, and was studying biblical theology with the goal of becoming a pastor at a church.   Jeremiah was slim and tall and had short clean-cut hair.  He had a beard with some stubble, and tanned skin from working outside in the summer months as a gardener.  Jeremiah had a relaxed demeanour, always talking slowly and calmly in his interactions with others.  His program at school consisted of Bible training, leadership, sciences, math, and psychology.  Aside from his studies, Jeremiah spent time volunteering with troubled youth, counseling teens 46  who were struggling with spiritual questions and emotional issues.  He described to me how he was in good health, but often felt that he ate fast food too regularly.  Jeremiah often referred to Herbert and Daniel as having very different lifestyles and perspectives about spirituality and life, while at the same time emphasizing that “we all respect one another, and I think that’s family; that’s brothers.”  Despite his view that the brothers had very different life trajectories, he described his family as having the same demeanour “we joke around, we are stubborn, and we all want to win an argument.” Christie.  Christie was a 60-year-old University professor with a PhD who lived in Eastern Canada.  She was the aunt of Herbert, Daniel and Jeremiah.  Christie worked more than 80 hours a week and was in a common-law relationship.  Although she had very good benefits at work, her benefits did not cover alternative healthcare (e.g. naturopathy, osteopathy), which she drew on to maintain her health.  Christie did not fill in her annual income on the demographic survey, however it is reasonable to assume her annual income as a professor was between $80,000 – $120,000 (Statistics Canada, 2009).  Christie had a house right beside a lake, and would often commute over an hour to get to her place of work.  During my long-distance interview with her on the phone she was sitting out on her front porch and remarked how “the coyotes are yipping across the lake, very, very loudly” which made it difficult for her to hear me.  She visited Herbert the summer of the year I was in the field in order to attend the wedding of Jeremiah.  She had the highest level of formal education that anyone in her extended family and described how she is drawn upon by her extended family to interpret or understand things that were health related: “That doesn’t mean that I’m smarter than they are; it’s just a different access to a different kind of knowledge, right?”  Christie appeared to have a very close relationship with her nieces and nephews, once 47  describing to me how Herbert’s well-being and happiness are something that she thinks about and that she is deeply invested in: “I mean I really love the guy.”  Shanti.  Shanti was the girlfriend of Herbert’s whom he met during the duration of this study.  She was 27 years old, had an MSc (OT), and worked as an occupational therapist in a small city near Milltown.  Her annual income was $40,000 and she lived alone in a rented suite that had sweeping views of a large river and farming valley in a small community near Milltown.   Shanti had shoulder length blond hair and had an athletic build. When I went to Shanti’s home for a dinner she was hosting for her friends one evening, I noticed how she kept a hammock hanging on her patio, which she described as a place where she would relax and stare out at the river valley during sunset.  I frequently noticed how Shanti had a seemingly perfect posture, always sitting up straight with her shoulders back when she was sitting down interacting with people.  She smiled a lot, and appeared to be a cheerful and upbeat person.  Shanti had met Herbert on an online dating website through recognizing Herbert’s brother Daniel in a picture Herbert had posted on the website.  She knew Daniel when she went to University in Eastern Canada, and described to me how she believed that her life seemed to always unfold in a serendipitous way.  Kalie.  Kalie was 26 years old and the long-term girlfriend of Daniel. She had a BSc and worked part time as a dietician.  Her combined annual household income she shared with Daniel was $ 80,000.  Kalie lived with Daniel in the major city two hours west of Milltown.   Kalie had curly shoulder length brown hair that she often wore pulled up into a bun.  She dressed casually, wearing long flowing skirts, cotton t-shirts, and sandals. She kept many of the same friends from her high school and was born and raised in the major city where she 48  currently lived.  Kalie grew a small garden patch in her backyard and told me wishes she could move and have a big garden in a smaller town, but cannot due to her and Daniel’s employment in the major city.  She was a vegetarian and took an avid interest in farming, nutrition, and locally grown food, which were topics that came up often with those in her extended health information network.  Roxy.  Roxy was a close friend of Herbert’s and had lived in Milltown on and off for 21 years.  She was 28 years old with a bachelor’s degree, and worked full time as a veterinary assistant and receptionist.  She owned her own two-story small home and lived off her annual income of $38,000.    Roxy was slim and of a medium height and she often wore her blond shoulder length hair tied back into a pony tail.  She also frequently had on small earrings, but wore no makeup or any other jewelry. She always appeared to be in a good mood and displayed a playful nature, always making jokes with me and laughing at my jokes.  Roxy described herself as an animal lover and had a dog and a cat that she talked about regularly with me and others in her social network.  Prior to her job as a veterinary assistant and receptionist, she used to work at the local café in Milltown where she met Kourtney, as well as Herbert who at the time was dating her friend with whom she worked in the café.  I observed that Roxy exercised regularly, ate a balanced diet of fresh foods, and that she rarely got sick.  Kourtney.  Kourtney was a 28 year old who had a bachelor’s degree.  She worked part time as a library circulation assistant and had lived in Milltown for four years.  Kourtney was married, and she shared a combined annual household income with her husband of $50,000.  She was close friends with Herbert and Roxy and saw them socially once or twice a week.  She 49  lived in a small home near the centre of Milltown with her husband and their cat.  In their backyard they had a few apple trees, and a well maintained vegetable garden.      Kourtney had short dark hair, wore no makeup, and had two nose rings in her left nose.  She was about five foot four and fair skinned.  Kourtney enjoyed cooking, gardening, playing board games, and reading literature.  She also liked hiking as a main form of exercise, which she enjoyed as a shared hobby with Herbert.  Some of her other shared hobbies with Herbert were a love of literature (they started a book club together), playing board games, hiking, and talking about spiritual and philosophical topics.  Kourtney described herself as somebody who does not like small talk and finds meaning exploring “deeper things”, like relationships or philosophical ideas. She told me she was an introvert and how she would often spend days on end without socializing outside of her interactions with her husband.  Despite her perceived introverted nature, she had a friendly demeanour and seemed to have a lot of friends in Milltown, often stopping to chat with people she knew in the local café when I was with her.  Kourtney described her husband as “stereotypically masculine” and told me that they have different social lives and different interests.  Amber.  Amber was a 36-year-old woman who worked in the same building as Herbert. She had lived in the community of Milltown for 12 years.  She had been married to her husband of Aboriginal descent for 14 years, and together they had an 11year-old son, and a seven-year-old daughter.  The family’s combined annual household income was $30,000.  Amber studied marketing in college, and was three credits short of graduation before dropping out.  She was self-employed and owed her own successful incense distributor business, situated in the back of the local community bookstore.   50   Amber had curly dark hair that she often wore in a ponytail and brown eyes that always seemed to have a sparkle in them.  She wore a bracelet on her left hand and one ring on both her right hand and left hand fingers.  Once when I met her at a restaurant two blocks from her work, I observed how she drove there to meet me rather than walking.  She was overweight and did not like doing anything fitness related after work.  She had a boisterous personality, often described by others in the community as raucous and opinionated.  She would often talk loudly to me in public settings about her struggle with depression and her husband’s mental health issues.  She took pride in being a mother, business woman, and wife, often talking about the meaning and purpose she found in these roles.   Expanded health information network.  Out of nine respondents derived from Herbert’s health information ego network, seven of those consented to filling out the same health information social network survey.  These participants’ consent is categorized by different data collection procedures (interview, observation, social network survey, demographic survey), presented in Table 4.1.  The seven respondents named on average of eight people with whom they shared health information and from whom they received health information.  This resulted in an expanded health information social network of 56 interconnected people deriving from (a) friendship networks, (b) family networks, (c) workplace networks, (d) intimate partner networks, and (e) health professional networks.   The expanded health information social network sample, consisting of 56 individuals, more than doubled as I: (a) observed Herbert and the nine respondents in his health information ego network engaging in health related interactions throughout the course of a year, and (b) interviewed the eight individuals in Herbert’s health information ego network about their health related interactions (see Table 4.1 for participant consent).  This three-scale approach to 51  collecting social network data strengthened the study by capturing the patterns of relationships between individuals of different ages, genders, ethnicities, and socio-economic backgrounds, which highlights the complex layers of social activity centering on exchanges of health information. Instruments  I designed and used the following instruments to collect some of the social network data:   Social network surveys. In order to answer my primary research question: “How do social network interactions contextualize and mediate health maintenance literacy behaviours, beliefs, values and practices?” I devised what is known as a social network survey, presented in Appendix A.  I designed this social network survey using a name generator technique where respondents are asked to name, by recall, the people with whom they have established a specific kind of relation (Daly, 2010), in this case people with whom they share and from whom they receive health information.  In consultation with a social network researcher (D. Tindall, personal communication, October 2012) in the Department of  Sociology at the University of British Columbia, I piloted the resulting social network survey on five of my friends who were not academics and not familiar with research protocol or academic language.  They gave me feedback in terms of whether or not the questions made sense, suggestions for improving the survey design, clarifying any confusing academic language, and so on.  Although the initial instructions in the survey asked participants to think of ALL of the people with whom they share and receive health information, my friends recommended that I provide a space for only ten network members when asking with whom they share and from whom they receive health information.  The limit placed on the number of people that participants can indicate is a common technique used in designing social network surveys in order to reduce the burden on 52  the respondents who need to think of the names of multiple ties (Golinelli et al., 2010).  I adapted the survey based on my friends’ feedback and used a fixed choice survey design in which respondents are given an indication of the number of network members they can nominate in response to a network survey question (Daly, 2010).  The final social network survey, found in Appendix A, therefore, provided space for Herbert and those in his health information ego network to name up to 10 people with whom they shared health information and up to 10 people from whom they received health information.  I then used a ranking design to measure the intensity of the relationship by asking respondents to rank order all the members in their health information network, beginning with the person they felt closest to (Daly, 2010).  I used a ranking design for conceptual reasons, as ties of different intensity have shown to perform different functions in networks, namely those related to the flow of information and ideas across individuals and groups (Weimann, 1983). When respondents produced a list of names, I presented them with a series of follow up questions, referred to by social network analysts as name interpreters, which were designed to provide additional data on the characteristics of each named person and the relationship between ties (Daly, 2010).  The surveys thus inquired into the participants’ relationship to the named individuals, including the length of time they have known each other, how often they saw each other, and by what means they communicated (in person, internet, phone, etc.).  The participants were also asked to fill out a section that solicited these named individuals’ occupation, gender, and town or city in which they live.  The survey furthermore asked participants to identify their relationship to the named individuals.  For example, who influences their health related decisions beliefs, values, and practices the most or the least, who they influence with their health related decisions, beliefs, values and practices the most or least, 53  who they rely on for a health emergency, and so on (see Appendix A for complete social network survey).    Along with the social network survey I also included a small demographic survey, that can be found in Appendix B, inquiring into participants’ education level and training, gender, language competency, ethnicity, employment status, citizenship status, marital status (including number of individuals in the household), annual household income, place of residence, if they have health care benefits, and if they have a general practitioner.   Individual interview scripts. Ethnographies usually use in depth interviewing as one of the principal forms of data collection (LeCompte & Schensul, 1999b; Purcell-Gates, 2004).  I used a semi-structured interview approach and created interview questions that were open-ended which allowed for other questions to emerge between me and the interviewee (DiCicco-Bloom & Crabtree, 2006).  The individual open-ended interview questions was designed to gain insights into the intersections of gender, education, language, social, and individual factors in relation to meaning making around health information – while exploring more deeply how health, health maintenance literacy practices, and health behaviour are interconnected and influenced by these demographic factors.  The individual interview protocol was designed to elicit information that would contextualize the participants’ every day engagement with health maintenance literacy, including when and where they engage with health maintenance literacy, as well as exploring from whom they receive and with whom they share health information, and the nature and meaning of these relationships.  In these individual interviews, I also explored the participants’ beliefs, values and attitudes towards health maintenance literacy, and how these might be shaped by people in their network – including friends, family members, intimate partners, professionals, and acquaintances, etc.  54   Herbert was interviewed first (over several interview sessions), and then I proceeded to interview those in his health information ego network.  As I went through the interview process, I included probes and questions to follow up on the answers to achieve more information about patterns and local meaning.  I also adapted some of the open-ended interview questions if they appeared to make participants uncomfortable or used language that was unfamiliar to the participant (Purcell-Gates, 2004).  For example, in Herbert`s individual interview I began the interview by asking about his general emotional, mental, and physical well-being.  I later realized this had made him uncomfortable so early on in the interview.  I then deleted this question in the interview protocol I designed for those individuals in his health information ego network.  The open-ended interview questions can be found in Appendix C (Focal Participant) and D (Health Information Ego Network).     Focus group interview scripts.  Focus groups use group interaction to produce data and insights that would be less obtainable without the interactions found in a group (Morgan, 1997). The focus group protocol was designed to help me understand from different perspectives the ways that health maintenance literacy practices are contextualized within overlapping social worlds and how this might influence the intersection of health and health behaviour.  The questions focused on teasing out the social dynamics that shaped how individuals in the group (a) influenced each other’s health practices, (b) perceived their role in the group (and each other’s perception of that role), (c) shared similar or dissimilar beliefs, values, and attitudes towards a health condition, and so forth.  The focus group interview questions can be found in Appendix E. Data Collection 55   Data triangulation procedures.  To increase the reliability and validity of the data (Purcell-Gates, 2004), and to add breadth and complexity to the analysis (Flick, 2002), I collected data from six different sources from December 2011 to December 2012: (1) social network surveys, (2) interviews, (3) focal participant’s health maintenance literacy practices diary, (4) field notes, (5) health maintenance literacy artifacts, and (6) transcribed talk. Triangulation, the use of more than one data source (Denzin, 1978), ensures that if one data source proves to be unreliable or incomplete, other data will be enough to provide the information necessary to holistically answer each research question posed (LeCompte & Schensul, 1999b).  According to Denzin and Lincoln (2008), the use of multiple data sources enhances the simultaneous “display of multiple, refracted realities” (p.8), and invites readers to “explore competing visions of the context, to become immersed in and merge with new realities to comprehend” (p.8).  Triangulating the data using different sources enabled me to look for patterns and themes that corroborate one another, which readers can then take away and use to enhance their own understandings of the phenomena of meaning making around health information in relation to other people and contexts (Purcell-Gates, 2004).  The following describes the data collection procedures applied in order to ensure triangulation of the six data sources.   Social network surveys.  After a month in the field, I requested that Herbert fill out a social network survey.  I then requested the seven individuals in Herbert’s health information ego network, who consented to filling out a social network survey (see Table 4.1), to complete the survey.    Interviews.  I conducted semi-structured individual interviews with Herbert, and eight individuals in his health information ego network who consented to being interviewed (see 56  Table 4.1).  To corroborate the individual interview data, I conducted focus group interviews with Herbert and his family network and friendship network as these networks were the most cohesive (i.e. everybody knows everybody, see Moody & White, 2003), which focused on the multiple meanings the participants gave to their social network interconnectivity and health information related interactions.   Focal participant`s health maintenance literacy practices diary.  I requested that Herbert keep an ongoing literacy diary (Barton & Hamilton, 1998) of his health maintenance literacy practices (i.e. what he read, wrote or talked about in his daily life for different health purposes; what kinds of health activities he engaged in; and his thoughts and feelings about his health, and health related interactions), which he did every few days throughout the course of the study.  Figure 4.2 provides an excerpt from Herbert’s health maintenance literacy diary and Appendix F describes the health maintenance literacy diary entry instructions.  I read Herbert’s health maintenance literacy practices diary entries once a month in order to clarify things he had written and sometimes request more information.   Field notes.  The writing of field notes is considered the backbone of ethnographic data collection (Purcell-Gates, 2004).  My goal was to observe Herbert in his natural social context over an extensive period of time, and I did not require that he adapt his day to day routine in order to participate in the study.  I wrote observational notes as I traced Herbert engaging in health maintenance literacy events throughout his day to day life.  I also recorded on paper my observations of those in his health information ego network and those in the expanded health information network.  These observations focused on social behaviours that centered around health, health maintenance literacy practices and what these look like; including where they come from, who they occur between, and in what types of situations they occur.  57   I made a practical decision, to do with restricting the exploration of literacy practices to a manageable one (see Barton, 2007), and focused on print and oral modes of communication as a precise starting point for gaining some understanding into the processes of meaning making around health issues and information.  These chains of communication involved, for example, recording people discussing dating relationships with their friends or discussing their experience with a particular health care provider, etc.  These observations helped to clarify what social interconnectivity looked like within these social networks, how it appeared to transpire at the relational level, and the social conditions that constrained or enabled interconnectivity around the exchange of health information.   Good field notes require that behaviours or interactions are written down as they happen and are observed, and not as the researcher interprets them (Purcell-Gates, 2004).  For example, I noted in my field notes from May 16th, 2012: “Herbert told me that when he is single he feels depressed and that he feels happier when he is in a relationship.”  I distinguished between what Herbert said, and my interpretation of what he said, by recording in a space on the field note form set aside for comments, “It seems as though Herbert is not comfortable being alone.”  I wrote down my field notes at the end of each day in the field, when I was not in the presence of the participants, always recording the: (a) date, (b) time, (c) setting, (d) observer, and (e) what was observed (Purcell-Gates, 2004).  To allow for recording my reflections and interpretations of events, I noted them along the margins of the field note form next to the recorded events.    I furthermore documented any observed instances of participants engaging with non-human modes of health information (e.g. reading a recipe, listening to a relaxation CD) in order to contextualize human-to-human interpersonal interactions around health information within a broader understanding of the variety of sources of health maintenance literacy individuals 58  engage with in their everyday life. As seen in Table 4.3, I documented health information engagements that did not involve two live participants, such as reading (e.g., a book on sexuality) or watching TV (e.g., a fitness program).  I did not include these sources in the analysis, however, as they were not central to the exploration of the ways health information is manifested in interpersonal social network interactions.  They did, however, provide some context in terms of a broader understanding of the variety of sources of health maintenance literacy with which individuals engage in their everyday lives.  I also worked to capture the physical and social contexts of my observations to add richness to the field notes (Purcell-Gates, 2004).  These documentations included (a) sketching the physical environment (e.g. the location of furniture, windows, objects in a room, etc.), and (b) sketching social contexts (e.g. what people were wearing, the length of their hair, where they were situated in a physical space, etc.).  I also took photographs of health maintenance literacy events while in the field that highlighted local health maintenance literacy practices and health behaviour practices.  For example, I took photographs of participants gardening together or playing sports together that captured interaction visually, such as body language. Some examples of these types of data can be found in Figure 4.3, 4.4, and 4.5.  Health maintenance literacy artifacts.  Another type of data that is often used by ethnographic researchers of literacy is artifacts, which can include newsletters, posters, signs, local papers, letters, documents, etc. (Barton & Hamilton, 1998).  Although I only focus on print and oral modes of communication around health information in this study, the artifacts I collected provided physical evidence of multimodal forms of health maintenance literacy and built context for my study (Purcell-Gates, 2004).  I collected various health maintenance literacy artifacts as I followed Herbert throughout his day to day life, and asked that he save any 59  health related artifacts that he accumulated in his daily life so that his engagement with these events would be traced when I was not present.  As well, I collected artifacts that all participants engaged with, such as health related pamphlets, health related websites, copies of cookbook recipes, newspaper articles on health topics that appeared in the local newspaper, and so forth.     Transcribed talk.  Many literacy researchers supplement field notes with audio-tapings of conversations while in the field.  Audiotapes can provide backup for researchers who cannot capture in writing field notes complex, fast moving events.  They can also provide exact quotes to be drawn upon in the final write up of the study (Purcell-Gates, 2004).  I audiotaped all informal conversations that Herbert had with me, or with others in my presence, that centered on the topic of health information (e.g. on hikes with Herbert and his friends, at Herbert`s family dinners, etc.).  As I branched out and spent time with those in the expanded health information network, I unobtrusively, with permission, audiotaped health related talk as these individuals interacted in a variety of social scenarios, such as at a family dinner, at the coffee shop, at a potluck hosted by Herbert`s girlfriend, and so forth.  Table 4.4 presents an excerpt for permission to audiotape health related talk extracted from the participants’ consent forms. Data Management   The field notes, transcribed talk, social network surveys, artifacts, Herbert’s health maintenance literacy diary, and interviews constitute the database for the analysis.  I digitally transcribed all of the audiotaped interviews and audiotaped informal conversations around health into Microsoft Word documents.  During my year in the field, at the end of each day, I also typed into a Microsoft Word document the field notes (including observations, reflections, and interpretations of what I observed).  Every week, I also downloaded the photographs I took 60  while in the field to my laptop computer.  Once per month, I scanned Herbert’s health maintenance literacy practices diary entries, and saved them as PDF files, and also stored them on my computer.  I also periodically photographed the artifacts that I collected while in the field, as well as the drawings of the environment, and downloaded these to my laptop computer.  I loaded the Microsoft Word documents, photographs, and PDF files into ATLAS.ti (ATLAS.ti Scientific Software, 2014).  ATLAS.ti is a computer software program that is used in the qualitative analysis of large bodies of textual and visual research data.  I imported the social network Excel files into UCINET (Borgatti, Everett & Freeman, 2002), which is a software package for the analysis of social network data, for computational analysis.  In the following data analysis section, I will describe in detail how I then uploaded the data sources to ATLAS.ti and UCINET computer software programs for data analysis purposes.  Data Analysis Social network analysis.  Using human-to-human communication around health information as a unit of analysis of human activity (Wertsch, 1998), I drew on a social network orientation to focus on all data that identified relationships centered around exchanges of health information (i.e. relational data).  These relational data came from the social network surveys, as well as from the qualitative ethnographic data (i.e. field notes, audiotaped talk, Herbert’s health maintenance literacy practices diary, and interview data).  To determine relations of health communication within the qualitative ethnographic data, I highlighted within the ATLAS.ti computer software program (ATLAS.ti Scientific Software, 2014) each interaction around health information and assigned one of the following codes: “speaking about health information;” “listening to health information;” “reading about health information;” writing about health information.”  61  Creating social network matrices.  I recorded the names of all individuals who engaged in exchanges of health information found within the relational data, as described above.  I then entered the names of each of these individuals into a row and column within an Excel spreadsheet, which is called a one mode data set because the names entered into the row and column are the same (Borgatti, Everette & Johnson, 2013).  I inserted the value of 1 beside the name of ties in the matrices if these two individuals communicated with each other about health information.  If there was no observed or reported communication between two ties, I inserted the value of zero.  The matrices entries represent tie strengths, meaning there are no other values other than simple 1s (i.e. a social tie) and 0s (i.e. no social tie) (Borgatti et al., 2013). Sometimes within the relational data people reported or listed individuals they interacted with around health information, but the other person did not report or list that person back, which is referred to as asymmetry (Borgatti et al., 2013).  Because these were networks of health communication, I drew on Bakhtin’s (1986) work to conceptualize communication as a living dialogue between two people: “Live speech, a live utterance, is inherently responsive, although the degree of this activity varies extremely...Sooner or later what is heard and actively understood will find its response in the subsequent speech or behavior of the listener” (p. 68-69).  I thus drew on the tenets of both Bakhtin’s work, and the Union Rule of social network analysis that stipulates that a social tie exists if either person mentioned the other (Borgatti et al., 2013).   In these cases, I symmetrized the data (Borgatti et al., 2013), meaning I gave the ties the same value of 1 with the assumption that these ties were reciprocating in the exchange of health information.  Creating sociograms.  I created different matrices to reflect different layers of health information social network activity.  For example, I (a) created a matrix that reflected Herbert’s 62  health information ego network (i.e. Herbert and the nine individuals he reported as being members of his health information ego network), (b) created a matrix that reflect the health information networks for each of these individuals Herbert reported as being members of his health information ego network (minus two participants who did not consent to filling out a social network survey, see Table 4.1) and (c) created a matrix representative of all of the individuals in the extended health information network.  I then imported the Excel matrices into UCINET (Borgatti et al., 2002) software to create descriptive visual maps, called sociograms. These sociograms gave me macro level insights into the social structure of the networks. UCINET’s NetDraw (Borgatti, 2002) tool for creating sociograms was useful in visually highlighting network structures and roles; such as the composition of a health information network, reciprocity in a health information network, who brokers flows of health information, and so on.  In addition, I inscribed manually onto these social network sociograms the demographic survey data gathered about gender, ethnicity, age, language competency, and socio-economic attributes.    Ethnographic qualitative analysis.  The ethnographic qualitative analysis relied on the following sources of qualitative data: interview transcripts, field notes, Herbert’s health maintenance literacy practices diary, artifacts, audiotaped talk transcripts.  All of the ethnographic data was organized, sorted, coded and patterned into a story or interpretation that responded to the research questions that guided this study (LeCompte & Schensul, 1999b).  I began this process by loading the data into the ATLAS.ti computer program (ATLAS.ti Scientific Software, 2014) to begin to figure out what patterns the data revealed and the stories the data told.  This qualitative ethnographic data was coded and used to describe social phenomenon around exchanges of health information - allowing the categories and names for 63  categories to flow from the data (Hsieh & Shannon, 2005).  Ethnographers sometimes describe how patterns and results “emerge” from qualitative data, as if this were a kind of whimsical process.  Patterns actually emerge because the researcher is engaged in a systematic cognitive process that takes place in three stages: (a) item analysis, (b) pattern analysis, and (c) structural level analysis (LeCompte & Schensul, 1999b).    Item analysis.  As part of item analysis, I first went through the data looking for any instance of people interacting around health information with another person.  Groups of similar items of interest became the primary codes for organizing the data (LeCompte & Schensul, 1999a).  I clearly operationalized each code in a separate dictionary of code definitions, which I repeatedly revised during the data analysis process as code definitions changed.  LeCompte and Schensul (1999b) refer to such a document as operational definitions: “Operationalization means defining a concept concretely in such a way that it can be understood, observed, or categorized accurately by any researcher reviewing the same data or observing in the same setting” (LeCompte & Schensul, 1999b, p. 153).  The codes were identified in the operational definition document as either simply “codes” that answered my research question or “contextual codes” that provided context that centred on the phenomena of interactions around health information.  During the item analysis process, I sought out negative instances (i.e. items that are unlike or items that contest the identification of a given item) in order to avoid making premature judgements about the meaning or identification of an item or accepting early or sometimes favorite interpretations (LeCompte & Schensul, 1999b; Purcell-Gates, 2004).  This stage of the process occurred as I read my field notes, interviews, transcribed talk, and other data over and over again until I was deeply familiar with the data, and found multiple instances of what can be operationalized as of the same phenomena (LeCompte & Schensul, 1999b). 64   I wrote analytic memos during each data analysis session that included my interpretations, insights, and questions about the data.  Each analytic memo included reflections on my decisions to adapt code operational definitions, including the date each decision was made and the data I was analyzing when the coding decision was made.  It also included evolving hypotheses or thoughts about the data analysis process.  This reflexive thinking often led to new insights, which led to revised or new codes or themes.  For example, I noted in my analytic memo in July 2012 how Kourtney said she had an interest in midwifery because her friend is a midwife.  I reflected that this data did not fit into “the things that link each other socially code,” which throughout the data was often related to shared passions and interests, such as nature, spirituality or music.  I then noted that I might create a new code labeled as “taking an interest in a friends’ health related profession,” which I defined as “instances where a participant says they take interest and make an effort to learn about their friend’s profession that is health related.”    In total, I arrived at 94 codes with operational definitions.  Some examples of these initial codes included: “trusting the health advice of a trained health professional;” “changing health related practices;” “sharing or accessing health related resources or materials.”  As part of item analysis, I also coded any data that provided context to an exploration of people interacting around health information, such as participants telling me about their family health history or participants describing their personal beliefs towards life and health.  An example of the codes and operational definitions can be found in Table 4.5.  Pattern analysis.  I next worked to identify patterns in the qualitative data through coding and theme analysis in order to explore the meanings the participants gave to social relationships in their lives.  “Patterns consist of groups of items that fit together, express a 65  particular theme, or constitute a predictable and consistent set of behaviours” (LeCompte & Schensul, 1999b, p. 155).  ATLAS.ti software (ATLAS.ti Scientific Software, 2014) was a particularly useful analytical tool for this stage of the analysis because codes and their relationship to each other across data sets can be visually displayed in the margins of the program.  Through a process of comparison, contrast, and integration, items are organized, associated with other items, and linked together into higher order patterns.  These patterns may emerge from prior research studies, the study’s theoretical framework or the researchers past experiences (LeCompte & Schensul, 1999b).  For example, in operationalizing the item “advocating against power for one’s own health,” I drew on my knowledge of critical theory that highlights how relationships are more than symbolic interactions (i.e. relations of communication), but also relations of symbolic power, beyond linguistic exchanges (Bourdieu, 1991) when defining this item.  In the analytic memo I described this item as: “speaking out against a situation or person that has more power than the individual.  This item is related to power dynamics and is therefore different than not following the advice of a friend....”  As I worked recursively back and forth between theories and the data, I developed insights into the meanings by which the participants understood and constructed their life worlds, and the social meanings they link to their interactions around health information.    Structural level analysis.  Slowly, pieces of the analytic puzzle come together to create an overall picture – or to constitute the structure – of the phenomena under exploration (LeCompte & Schensul, 1999b).  Following the pattern analysis, I developed broader themes that involved blending many of the initial codes into finer tuned themes that captured similar conceptual dimensions across the data.  These broader themes, for example, were named: “funds of knowledge;” “the meaning of health information;” “individual and social interactive 66  factors.”  These broader themes were then pulled together into a meaningful whole - the interpretation (Purcell-Gates, 2004).   The interpretation.  I began the interpretation by returning to the original research questions and reviewing the theoretical and research literature that contextualized the study.  This process helped me focus the interpretation on what others can learn from the study and how this is supported by concrete, specific examples.  The interpretation, however, goes beyond a description of phenomenon; it offers meaning to categories and patterns of behaviors, values, and beliefs and involves speculating and drawing implications (Purcell-Gates, 2004).  I thus developed a data narrative (Dobbert, 1982; Purcell-Gates & Dahl, 1991) for each major theme I found in the analysis of the qualitative data.  The data narrative pulled together and summarized the main patterns that I found within each major theme, helping me bring my analysis together into a meaningful whole.  The final product is therefore my construction, a research report by one social scientist studying the phenomenon of everyday interactions around health information in a small social network of adults.  At the same time it is populated with many other voices, as I have highlighted by using the participants’ words, and including many of their quotes.  However, the selection of these words from the pool of data was still my choice and was contextualized in the text using my words (Barton & Hamilton, 1998).   Reliability  By research tradition, reliability refers to “the repeatability of research findings and their accessibility to other researchers; that is, it is concerned with whether another researcher under the same circumstances would make the same observations leading to the same set of conclusions” (Davies, 2008, p. 96).  No ethnographic study, however, is truly repeatable either by another ethnographer or even by the same ethnographer at another point in time (Davies, 67  2008).  This is because: (a) the ethnographic researcher is the main instrument of data collection, and all information collected and generated is filtered through their biases, perspectives, and subjective opinions (Schensul, Schensul & LeCompte, 1999); and (b) even the same ethnographer will always be a different person as he/she changes throughout time, and therefore will bring new and different perceptions to their work in the field  - as those in the community will always be changing too (Davies, 2008).  Although I recognise the inimitability of the context I studied, and my role as an instrument in data collection, I have made it possible for others to replicate this study through their own interpretive lens in other contexts (or in the same context at another point in time) by providing details of the instrument construction, data collection techniques, analytic procedures, and results so that readers will be able to identify and duplicate the primary sources of information for this study (Schensul et al., 1999).    The reliability of ethnographic data is also accomplished by spending extensive time in the field.  “To ensure that behaviors coalesce to constitute patterns, the research needs to continue over a long enough period.  This allows one to watch for recurrence, to observe similar behaviors in different contexts, and to enable the revelation of behaviors, thoughts, and feelings that may have been repressed due to the presence of the researcher” (Purcell-Gates, 2004, p. 99).  I was in the field and collected data for one calendar year, which provided me the time needed to ensure the reliability of the data.  Further, I participated in many different events in the community which allowed me multiple access points over the year to the data relevant to my research questions.  By immersing myself over an extensive period of time in the cultural context of interest, I stopped seeing the world only through my eyes and began to see it also through the eyes of the participants (Purcell-Gates, 2004).   68   Procedures for ensuring reliability were also built into data analysis.  Because all of the steps in the analysis involved acts of interpretation, I sought to evaluate the reliability of my analysis, and whether the inferences I made from the data would be similar to those that other researchers working in the same paradigm would make (Barton & Hamilton, 1998).  I thus met with my supervisor, a well-known ethnographic literacy researcher (Purcell-Gates, 1997; 2004), once a week over the period of one year to review the ethnographic qualitative coding, the operational definitions, as well as the analytic memos.  This ongoing dialogue allowed me to compare our perspectives and check the reliability of the data and the analysis of the data.  I also met periodically with an expert in social network analysis (Tindall, 2002), a professor in the Department of Sociology at the University of British Columbia, to receive feedback on the social network analysis data collection and analysis.   Validity   “Validity refers to the truth or correctness of the findings” (Davies, 2008, p. 96).  Studies that use only one source of data can be critiqued for a lack of scientific rigor (LeCompte & Schensul, 1999b).  The validity and reliability of the data were strengthened by the use of multiple data points and their triangulation during the analysis process (Purcell-Gates, 2004).  Triangulation involves cross-checking the accuracy of the data obtained from one source with data collected from other sources (LeCompte & Schensul, 1999b).  In addition, it was in my being reflexive of how my assumptions and perspectives shaped my interpretations of the everyday social life I was observing, that the validity of this research was also enhanced (Davies, 2008).   Presentation of Results 69   The results presented in the following two chapters are based on these data collection, management, and analytic methods.  In the presentation of results, I have chosen excerpts of data that were often reverberated across various data sources (e.g. discussed in a focus group, discussed in an individual interview, observed by me).  I often selected direct quotes from participants to illustrate the major themes with exactness and precision.  The following two chapters present the outcomes of the analysis for two sets of major research questions.                   70  Table 4.1 Herbert’s Health Information Ego Network: Description of Participant Consent  Participant Consented to Social Network Survey Consented to Demographic Survey Consented to Interview Consented to Observations Herbert  Yes Yes Yes Yes Kourtney Yes Yes Yes Yes Daniel Yes Yes Yes Yes Jeremiah Yes Yes Yes Yes Roxy Yes Yes Yes Yes Wanda No No No Yes Christie No Yes Yes Yes Shanti Yes Yes Yes Yes Kalie Yes Yes Yes Yes Amber Yes Yes Yes Yes               71   Figure 4.1. Sociogram: Herbert’s Health Information Ego Network. With whom he shares health information and from whom he receives health information.          72  Table 4.2 Herbert’s Health Information Ego Network: Select Demographic Information Participant Age Household Income Highest Level of Schooling Employment Marital Status Herbert’s Network Location Herbert 27 20,000 3 Years College Unemployed/ Volunteer Bookstore Manager Single  Milltown  Kourtney  28  50,000  BA  Library Assistant  Married  Friend  Milltown Daniel 26 80,000 MSc Environmental Chemist Common-Law Brother Major City Near Milltown Jeremiah 23 45,000 High school Theology Student Married Brother Small Community Near Milltown  Roxy 28 38,000 BA Veterinary Assistant Dating Friend Milltown Wanda - - - Zoo Keeper Married Mother Small Community Eastern Canada  Christie  60  -   PhD  Professor  Married  Aunt  Small Community Eastern Canada  Shanti  27  40,000  MSc (OT)  Occupational Therapist  Single  Girlfriend  Small Community Near Milltown  Kalie  26  80,000  BSc  Nutritionist  Common-Law  Friend  Major City Near Milltown  Amber 36 30,000 Certificate Business Management Small Business Owner Married Colleague Milltown Note. The focal participant was from Milltown which is a low SES rural community.  Although many of the participants from this study were situated in Milltown, there were several others who were dispersed geographically across the province and country.  For example, as exemplified in Table 4.2 those in the focal participants’ health information ego network were dispersed across the province and country, and had varying levels of SES. 73   Figure 4.2. Excerpt from Herbert’s Health Maintenance Literacy Practices Diary.       74    Figure 4.3. Photograph Documenting Health Maintenance Literacy Activity: Extended Health Information Network Paying Soccer.         75   Figure 4.4. Photograph Documenting Health Maintenance Literacy Activity: Herbert, Kourtney and Shanti Discussing the Benefits of Eating Organic Apples.   76   Figure 4.5. Photograph Documenting Health Maintenance Literacy Activity: Herbert, Jeremiah, Daniel, Kalie, Christie, Wanda Playing Board Games and Eating Snacks.           77  Table 4.3 Examples of Documented Sources of Health Information That Were Not Between Live Humans  Source of Health Information Reading Joy of Cooking Cookbook Reading Sign at Health Food Store Reading Sign at Juice Shop Watching Health Related TV Program Reading Health Magazine Reading Novel with Health Information Reading Information about Potential Dating Partners at Online Dating Website Reading Information at Online Canadian Physician Website Reading Materials for a First Aid Course and CPR Course Reading Online Peer-Reviewed Health Articles Reading Information at Provincial Anxiety Website Reading App about Managing Anxiety Listening to a Relaxation CD Watching Documentary about Neuroscience, Environment and Genetics Reading a Book about Sexuality Doing an Internet Search about an Eye Condition Researching Osteoporosis Medication Online Researching Irritable Bowel Syndrome Online Reading Information about Health at WebMD.com Watching TV Advertisement about Dieting Watching Workout Video     78  Table 4.4 Example of Permission to Audiotape Health Related Talk Extracted from Participants’ Consent Forms                   “…I also might unobtrusively audiotape health related talk you are engaged in (such as a conversation you are involved in at the pub, at the pharmacist, at work, or in the home).  I might also take my own notes about things I observe related to your understanding and use of health information. I might also document the visual environment, what you do with health maintenance literacy in different settings. Those who are not participating in this study will not be photographed.  Your participation as I observe you will not require you to deviate from any normal activities…“  79  Table 4.5 Examples of Codes from Operational Definitions Coding Manual  Operational Definitions of Codes  Code: Accessing and Using Services   Definition:  This means somebody accessing and receiving a medical service.  This does not describe information sharing, but rather relates to something being done to a person that is health related, such as a physical exam, a blood test, chemotherapy, an x-ray.  Code: Acquaintance Network Definition: It means someone who is described as an acquaintance. In other words, somebody they know casually/informally.  Code: Advocating Against Power for One’s Own Health   Definition:  It means a person orally or verbally asserting their rights or opinions related to promoting their own health and wellbeing.  This code describes speaking out against a situation or person that has more power than the individual/patient.  This code is related to power dynamics, and is different than not following the advice of a friend (see code: Promoting One’s Own Health).  Some examples are speaking out against living conditions – such as no ventilation in a building, telling a physician that you do not agree with the prescription dosage, understanding and asserting one’s own rights as a patient, such as refusing a medical treatment, etc.  Code: Challenging/Rejecting/Evaluating Health Information Definition: It means examples of people challenging and evaluating health information.   It can involve instances where people question, reject, or do not use the health information because of their own educational training, because they do not trust the source, because the information goes against how their body feels, because they perceive the information as trend based - too commercialized – too economically driven, because the information is too “medicalized” without any holistic component, because the information is not the same as one’s own beliefs, values, or personal life philosophy related to health, because the health information shared does not pertain to your own circumstance (like parenting advice), because the information targets a gender (e.g. diet information targeted at women)  etc.     Code: Change in Health Related Practices Definition:  This describes somebody changing their health related practices.  It might be due to an obvious change in their life, like starting a new job or an influence that is not apparent.  Code: Change in Health Status Definition: This describes a change in somebody’s health status.  This could be deteriorating health, or improved health.   80  CHAPTER 5  RESULTS  MEANING MAKING IN SOCIAL NETWORK INTERACTIONS AROUND HEALTH INFORMATION  I used a research question that was designed to explore the role of social network interactions in mediating knowledge construction and meaning making around health information.  My major research question was: “How do social network interactions contextualize and mediate health maintenance literacy behaviours, beliefs, values and practices?” The analysis highlights how social interactions around health information were pervasive in network members’ day to day lives.  Social network interactions appeared to mediate health maintenance literacy activity through: (a) overlapping and changing social networks; (b) listening, speaking, reading and writing about health information; and (c) exchanging health advice, information, and resources on topics related to physical, emotional, mental spiritual and dental health.  A deeper exploration of the data revealed the ways that social network members attributed meaning to health information were shaped by their interpretations of self and interpretations of the other in social interactions.  These meanings were shaped by a variety of personal and social factors, as well as contextualized by exterior factors.   Social Network Interactions around Health Information were Abundant, Fluid, and Encompassed all Dimensions of Health  Health information was communicated through overlapping and shifting social networks.  Exchanges of health information occurred in network members’ intersecting health professional networks, family networks, friendship networks, intimate partner networks, 81  workplace networks, school networks, and acquaintance networks.  In the social network surveys, participants were asked to name up to 10 people with whom they share health information and up to 10 people from whom they receive health information.  The number of people that individuals reported receiving and sharing health information sometimes differed. For example, Shanti, an occupational therapist, perceived herself as someone who shares more than receives health information with those in her workplace, family, and intimate partner network.  Shanti also believed she gave emotional health advice and support to her friends more often than she received this kind of health advice and support from them, describing in her interview how one friend contacts her weekly for relationship advice: “Probably weekly she comes to me with relationship stuff”.           On average, participants named eight people in the social network survey with whom they shared health information and from whom they received health information, rarely naming 10.  Interacting about health related matters with others was described as having an “awkward” quality by Herbert in his interview:  I find almost it awkward sometimes bringing up health issues with some people because people feel it is a private thing and do not want to discuss it and I do not know the boundary of what people feel.  It’s hard to tell with people if you have not discussed already health stuff with them whether or not they feel comfortable talking about it.  It’s a weird kind of category unto itself.  One cloudy day hiking up a mountain trail near Milltown, I asked Herbert how many people he would talk to if he had a fairly important health related decision to make, he indicated that he would talk to only two people: “I would talk to my mom and my brother, I would say”.  My analysis revealed that discussions around health were considered by the participants to be of a 82  private nature, as opposed to discussions around other topics.  For example, when Herbert had a major work related decision that would affect his future mid-way through this study; he described in an interview how he was going to ask for advice from everybody he knew:  I will talk to everyone… With big life decisions like that and when I feel quite confused about it and not quite sure, I know it is a big move, I will get every single piece of advice that I could take… I definitely think a group can make a better decision than one person.   The ethnographic observational field notes illustrated that although individuals perceived themselves communicating with less than a handful of others about health information (as was found in their social network survey and interview data), they in fact engaged in a broad range of social interactions around health information (e.g. on topics related to asthma, allergies, back pain, dental care, childbirth, etc.) in different social spaces (e.g. at the supermarket, at soccer practice, at the pub, on hikes with friends, etc.).  This social interconnectivity in health information networks is depicted in the sociogram found in Figure 5.1.    Social networks also changed throughout the course of the study.  For example, half way through the study Herbert requested to change the initial information he provided on his social network survey to reflect changes in his personal life (e.g. he started dating a woman during the course of this study), as well as changing perceptions of the influence of individuals’ in his social networks.  In his individual interview, Herbert described how he realized that Kalie had a significant impact on his health maintenance literacy practices:   As far as health maintenance literacy the person that influences me the most would be  Kalie, Daniel’s girlfriend, because she is soaked in nutrition and she loves talking about it, and it’s often what she talks about.  I did not really think about her at the beginning of this whole thing, but she is very influential when I think about it…. She is 83  learning organic farming and stuff and going to schooling for that too.   Jeremiah described how social network categories (e.g. family network and friendship network) are overlapping and fluid when he referred in his interview to his brother Herbert as his friend also:    Yeah. I would think he’s a brother. Yeah. I mean, I don’t think we always were in  that place, but I mean, I feel for the last couple of years or so, we’ve been able to build  a relationship… I think we enjoy each other. I think we’re friends. He might say  otherwise, but….   Health information was primarily exchanged through oral interactions in social networks.  In this analysis, health information exchanges within social networks were accomplished primarily through oral interactions, rather than through the use of print.  For example, 95% of the quotes showed that health information was exchanged through listening and speaking, whereas 5% of the quotes showed that health information is exchanged through reading and writing.  Some examples found across the data sources of participants exchanging health information orally included: discussing birth control options with friends, listening to a physician’s diagnosis and medication recommendation regarding a bone scan, recommending a client enroll in a stress management program.  Examples of a few instances of people engaging with print in the exchange of health information included: emailing one’s intimate partner about exercises to relieve a pulled muscle, siblings texting each other about their shared experiences with depression, dating acquaintances communicating about their relationship on an online dating website forum.  Sometimes participants read about a health related matter and then talked to somebody in their network, which fell under listening and speaking.  For example, Kalie frequently read peer reviewed articles online about nutrition and then talked to her 84  colleagues about what she read.   During a typical day a participant would engage with a variety of health information modes, including linguistic, visual, audio, gestural and spatial modes.  These modes often interlaced to create multimodal meaning making around health information.  Although documentable instances of print and oral exchanges in interpersonal health networks were the focus of this study, the participants undoubtedly simultaneously integrated various forms of meaning making when engaging with health information.  For example, as he goes about the day, Herbert depicted himself in an interview as engaging with various health information modalities about “ten times” a day:   Around ten times a day sounds good.  I walk by the health food store and see their  signs, I walk by the juice store here and see his signs, I watch TV and read books, as  far as even novels would have health information in it in terms of what they do.  I talk  to people online, I see folks here at the bookstore, that could add up really quickly.   The observational field notes, however, illustrated that Herbert engaged with health information much more than ten times a day.  For example, there is evidence from the field notes that he exchanged oral and print health information with those in his multiple social networks repeatedly throughout the course of a day (e.g. at the grocery store, at badminton practice, preparing a meal with his aunt, at lunch break with his colleague, and so forth).    Emotional, mental, physical, spiritual, and dental health information was exchanged in social network interactions.  In this study health is defined as a human condition that describes a state of emotional, mental, physical, spiritual, and dental well-being. Physical health was discussed the most in this study, with 35.6% of all quotes relating to this category of health.  While 27.4 % of quotes were related to emotional health; 16.1% of quotes 85  were related to spiritual health, 14.2% of quotes were related to mental health, and 6.6% of quotes were related to dental health.  The various data sources revealed that social network members exchanged a broad range of health advice, information, and resources within these different categories of health.  These categories were sometimes overlapping, which highlights the interrelatedness between emotional, mental, physical, spiritual, and dental health in terms of an individual’s conceptualization of their overall health and well-being.  For example, Amber, who had struggled with depression for most of her adult life, attributed her illness to a chemical imbalance, which she believes is related to environmental influences that the body absorbs:   I’m a huge proponent of medication for chemical imbalances, because that’s all it is,  right, is a chemical imbalance...just like diabetes is a sugar imbalance in your body…I  believe that through environmental influences, whether it be the pollution in the air or,  you know, the sediment in the water that you drink or, you know, the antibiotics that they  feed animals and just those environmental factors, I really think they have a bearing on  the chemical makeup of your body.   In addition, when I met Daniel for coffee in a popular neighborhood café in the major city where he lived, he told me how he had suffered from colitis (i.e. inflammation of the colon) for the past three years.  In our discussion he described the interconnectivity between physical, mental and emotional health when he described how the onset of his disease occurred when he was under a lot of stress:    There was a lot more stress associated with my life, I was finishing my thesis and  working too hard, crazy hours, to get the research done and writing, and still kind of  living the student life.  I would say yes, that had something that had to do with it.   86  Social Network Interactions Shaped the Meaning of Health Information Exchanged   In order to move beyond surface level findings, such as the content and sources of health information exchanged, I further analyzed the data to understand how social network interactions contextualize and mediate health maintenance literacy.  This deeper analysis of the data gave insights into the meaning generated around health information in social network interactions.  The following will describe key themes that I identified that illustrated for me how participants’ interpretations of the self and interpretations of the other are what gave rise to the meaning of health maintenance literacy knowledge in social network interactions.  Health maintenance literacy meanings generated from these network interactions were shaped by a variety of personal and social factors, as well as contextualized by exterior factors.  These themes presented below are not to be understood as distinct and hierarchically ordered, but rather as horizontal interconnected concepts that are mutually interdependent.    Interpretation of self shaped the meaning of health information in social network interactions.  The analysis of data revealed that the ways that participants interpreted the self shaped their understanding, use, and communication of health information in social network interactions.  For example, when I met Jeremiah one afternoon at a local pub on his lunch break from his summer job as a gardener, he told me that he interpreted himself as somebody inquisitive who was always questioning things, and this was reflected in his interaction style when communicating about health information in social network interactions:   Yeah, I consult with, like I said, like a plethora of people.  I like to know what the  general consensus is.  If I don’t know I want to-I’m a person that if I don’t know  something I kind of have to figure it out. I like to ask questions I guess.  I am always  kind of questioning things.  87  The role of one’s interpretation of self also includes individuals’ beliefs, values, practices, and perspectives towards life and health.  For example, Herbert believed that his body should “run its course” and he told me in several informal conversations how he often refused to take medication or to see a health professional.  In the following quote, he described his overarching philosophy towards health that can be found across his data: “If I look after my body, it will look after itself.”   Interpretations of self also included reflections of the state of one’s physical body, mind, and spirit.  Health knowledge that emerged from social network interactions were shaped by network members’ reading of their own bodies and/or personal health experiences.  For example, Amber described a situation where she had a painful rash on her hands and requested that her GP refer her to a dermatologist because she was not reacting well to the steroidal cream he had prescribed:    It feels like it takes all the skin off, like, the layer of skin. So then what happens is I have  this, like, fresh skin that’s not ready to be exposed yet, exposed, and it really hurts…I’ve  been to the doctor and he gives me, like, steroidal cream for it. And then he gives me  extra strong steroidal cream for it.  And I’m, like, ‘send me to a dermatologist,’ and he  won’t refer me to a dermatologist.  The analysis revealed numerous instances that depicted how participants’ knowledge of how their body felt to them shaped how they communicated, interpreted, and decided to use health information in different social network interactions.   Interpretation of the other shaped the meaning of health information in social network interactions.  The analysis also highlighted that the way people interpreted others in their networks shaped their understanding, use, and communication of health information in 88  social network interactions.  For example, Jeremiah described how he interpreted his brother Herbert as “smart,” which shaped the meaning of health information Jeremiah received from his brother: “He is a pretty smart guy…Yeah, I would take health advice from him.”  In another example, Kourtney described, when we were chatting over lunch one day, how she interpreted her friend Herbert as someone who is okay being informed about changing what he believes in, and how she interpreted him as “more comfortable with accepting a lack of meaning in a grand sense than I am.”  Kourtney’s interpretation of Herbert led to rich spiritual discussions between the two friends such as ongoing discussion about the meaning of life, the nature of human suffering, and the possibilities of free will.  The role of interpretations of the other was reflected in social network interactions around health information in the data, and played a significant role in shaping social network communications.   The analysis revealed that social network interactions shaped health maintenance literacy for network members through the meanings that emerged from the interpretation of the self and interpretation of the other (the other’s competence, the other’s knowledge, the trustworthiness of that person, and so on).  Sometimes people described a quality to their social network interaction, such as “respect,” “trust” or “care” which revealed how people interpreted the meaning of health information shared.  Sometimes participants had an interaction style (e.g. “hands off,” “blunt,” “non-confrontational,” etc.) based on their interpretation of the self and their interpretation of the other, which shaped how they communicated, understood, and used health information.  For example, Daniel described in an interview a quality of “care” that emerged from his interpretations of his interactions with his mother, which shaped how he valued the information she shares:  89   With my mother she plays more of a caring role, somebody who has advised me my  whole life so she has my best interest at heart.  Whereas with other people you don’t  carry the same kind of weight to their words.   Furthermore, Amber captured the role of interpretation of self and interpretation of the other in terms of shaping one’s interaction style in the exchange of health information.  In the course of her interview, she described how she has learned to share health advice effectively with her husband: “I’ve learned to, you know, say things in such a way that it’s not belittling or-so that he won’t take it the wrong way, that sort of stuff. Because he’s quite sensitive that way, too.”    The analysis of data also generated insights into how each network member had a social position that was fluid and based on self and social interpretation, including embodied understandings.  Amber, who I observed in various scenarios asserting her health related opinions and needs with others in her social networks, captured her shifting social role depending on who she was talking with: “I am the boss. I rule my own home, and I have a big loud voice at my mom and dad’s house too if I disagree with what they’re doing. But that changes when my brother’s around.”  Personal Factors Shaped Interactions around Health Information in Social Networks   The analysis of data found that participants’ meaning making around health information in their social network interactions could be shaped by individual factors.  Some of these individual factors that arose in the data were related to: education and training; economic circumstance; personal passions and preferences; access to health benefits; memories of childhood experiences; mental, physical, emotional, spiritual, and dental health status; age; gender; and so forth.  For example, Daniel described in an interview the role of his education in chemistry and biology as shaping his understanding of health information: “I have a science 90  background and mind so if it is proven I am pretty ready to be convinced.” Furthermore, Shanti described to me over coffee a time in her life when she did not have extended health benefits, which prevented her from accessing and using health services:   I didn’t have insurance. I sprained my ankle really bad when I didn’t have insurance and  I didn’t go to physio or anything.  And I think that might have, like, negatively impacted  my future ankle health, because I just didn’t do anything except just what I knew to do,  which was stay-off of-it and-ice principle.  Other individual factors, such as memories of childhood experiences were found to shape participants’ health maintenance literacy practices.  For example, Herbert and his two brothers all attributed their current love of physical exercise in nature to their memories of spending time in nature as children.  As Jeremiah described, when we met over lunch at a pub one day, “When you grew up with a family that doesn’t have much money, what are you going to do, hang out? You’re going to go for a walk.”  Kalie’s interview data also included a description of her personal passion for nutrition which shaped her health, health behaviour, and health maintenance literacy, and that I found influenced others in her network:   I decided I wanted to go to university and then thought what am I going to study?  And  then I found out that nutrition was offered as a program.  And I was like, I have always  been into food, and being healthy, I have always enjoyed that.   Social Factors Shaped Interactions around Health Information in Social Networks   The analysis of data found that participants’ meaning making around health information in their social network interactions were shaped by social factors such as: shared hobbies and activities, beliefs and values that people share socially, observing the health behaviour of somebody in the network, shared health status, spatial context between people, and the shared 91  geographical contexts people live in.  For example, Roxy who worked in a small veterinary office that had three female staff members described in an interview the role that spatial proximity plays in mediating conversations around health information: “There is only three of us that work there, so it’s pretty small that way, so I guess we get to know each other pretty well.”  Sharing a similar health status appeared to shape conversations around health information.  This was illustrated by Kourtney when she described to me one day, when we met in a local café in Milltown, conversations she had with her brother about a shared experience with depression:   …My younger brother with this whole depression thing.  We talked a lot about it.  Especially because he has been to a counselor and what we were talking about,  discussing this whole aspect of depression as an illness versus sort of a valid problem  you might be dealing with in your mind.  It was really good for both of us because we  were going through something so similar.  Observing the health behavior of somebody else in the network was a social factor found across the data.  For example, in my observational field notes, I documented how Herbert showed me a china tea cup that had a white bottom, and described how his Aunt taught him (e.g. showed and explained) how to fill the milk up to the line where the white stops in the tea cup, a ritual he diligently follows when he prepares tea.  Exterior Factors Contextualized Interactions around Health Information in Social Networks   Exterior factors were seen by the participants as contextualizing the role that social networks play on health maintenance literacy.  Such factors included: access to health services (e.g. living in a rural context verses living in an urban context), environmental factors (e.g. air 92  quality), economic factors (health care budget cuts), etc.  These exterior factors appeared to influence health related interactions in social networks, as well as individual health and health behaviours.  One day while chatting with Herbert on his break at the bookstore, he told me that he did not have a General Practitioner (GP) in Milltown, and how he would have to go to emergency to see a doctor because there was not a walk-in medical clinic in Milltown: “There is only the hospital here, emergency…So, I only will go to the doctor if I am going to die or something.”  Kalie, for example described in an interview how reading about exterior factors influenced her father’s beliefs about the origin of his severe migraines: “He has realized how many preservatives are in food and all the sulfates, which are in so many things, so it is really hard to cut it out.  And with all these other things, the environmental pressure and pressure systems coming in and stuff can affect it.”  In another instance, Christie reflected on the impacts of toxins in her home and the degradation of the earth, that she believes impacts health:    In terms of physical health, yeah, the house that I - a bit bittersweet-the house that I live  in - I didn’t know it at the time, but all the floor - all the main support beams are coated  in creosote, which gases off, so we have a whole circulation system to take that gas off  away. So I really don’t know, but I wouldn’t be surprised if that impacts my health in  some way. I think at a larger scale, I think we’re poisoning ourselves as a - as a society  and as a - and as a planet. I mean, I think we’re in real, real trouble.  Natural Rhythms of Change   In this analysis of data there were numerous instances of shifting interactions around health information due to intersecting life course changes such as relationships beginning and ending; schooling; moving; aging; employment; changes in health status; changes in health related hobbies and passions; changes in values, beliefs, attitudes, and perspectives, and so 93  forth.  For example, relational interactions around health topics sometimes shifted because of changes in one’s physical health.  Daniel described over coffee one day how having colitis had “forced” him to talk about his body, which is something that he was not comfortable doing before:    I have talked to a lot of people about my bowl movements, and so I do not know if I  would have been comfortable with that before.  It has forced me and if you talk to people  about stool and bowl movements openly with people, you get pretty comfortable with  everything, and I think that has been the case.  Roxy also described how time can alter social roles and family network interactions around health information.  In the following interview she reflected on changing health related conversations with her parents as she transitioned into adulthood: “We (she and her parents) don’t really discuss healthy eating, obviously they would have because it is pre-instilled in me to eat healthy, but we don’t really talk about it as much anymore.”  There were also abundant instances of changes in attitudes, perspectives, values, beliefs due to life experience and circumstances.  For example, one day sitting outside on a bench in the sunshine together Shanti described why she decided to become an occupational therapist, which eventually shaped her knowledge about health immensely, and her health related interactions in her various networks:   I took kinesiology and did more placements in my undergrad with a physiotherapist…I  kind of realized maybe physiotherapy wasn’t exactly what I wanted to do cause it’s kind  of repetitive…Like, you see a lot of chronic back and neck pain and it’s just all kind  of the same cause it’s muscles.  I just didn’t feel like I wanted to do that, and I guess  that’s what led me to occupational therapy.  94  In this analysis, social network interactions contextualized and mediated health maintenance literacy related behaviours, beliefs, values, and practices in a fluid way because social networks interactions around health information were embedded in organic rhythms of life course change.  Summary of Results  The outcomes of the analysis identified patterns around meaning making in the social activity domain of health maintenance.  Keeping in mind that ethnography is always interpretive research, my analysis was dialogical in the sense that I drew on the words and voice of the participants, as well as my own voice as the author in this analysis (Denzin, 1997).  The major themes found in this analysis seem to show us some of the social aspects that shape how meaning is made in the exchange of health information in this small social network of adults.  The data also revealed how as participants moved through time, their health status and health interests changed, which resulted in shifting network interactions around emotional, mental, physical, spiritual, and dental health.  In Chapter 7, I will discuss in more detail my interpretation of the major themes found in this results chapter.      95   Figure 5.1.  Sociogram: Expanded Health Information Network. (P) Symbolises a relationship in the past (over a year ago).  (F) Symbolises a friend.  Because these were social networks of health communication, ties were reciprocating in the exchange of health information, and thus information flowed between them bi-directionally.          96  CHAPTER 6  RESULTS POWER, AGENCY AND THE FLOW OF HEALTH INFORMAITON  IN A SOCIAL NETWORK   The results of analysis presented in this chapter were based on my research foci which included two major research questions: (1) “What roles do institutional and close interpersonal power dynamics play in shaping the flow of health information in social network interactions?” (2) “How do people advocate for their own health or the health of others in social network interactions (e.g. what does this look like)?” Here I provide the insights I gained through this analysis into how flows of health information are embedded in social patterning that are always contextualized within complex layers of macro and micro level power dynamics. Drawing on theoretical frames of social relations and the patterns they form and of language and literacy as being inextricably bound to social and cultural life, I was able, with this analysis, to explore through a critical lens different gradients of interpersonal and institutional power dynamics that shaped the flow of health information in the social network interactions captured in my data.  This allowed me to explore the ways health information streamed through the social network interactions while considering how this flow was embedded in a delicate interplay of societal and cultural forces that are shaped by the intricacies of power relations.    This analysis presented here specifically looks at issues of power and agency, drawing on a subset of data that I pulled from the larger analysis presented in Chapter 5.  I will describe these layers of context to facilitate the reading of this particular analysis, which focuses on the ways communication took form in social network interactions around health information and 97  the role that institutional and interpersonal power dynamics play in shaping this flow of health information.  This analysis is based on a portion of the data collected for Research Question #1, found in Chapter 5: “How do social network interactions contextualize and mediate health maintenance literacy behaviours, beliefs, values and practices?”  For purposes of clarity, I will describe only the specific methods that relate to this analysis in the following. Participants  The participants for this analysis included Herbert, who was the focal participant for the larger analysis, and eight individuals he identified as being in his health information network (Daniel, Jeremiah, Christie, Shanti, Kalie, Roxy, Kourtney, and Amber) all of whom consented to being interviewed,  observed and to filling out a demographic survey.  Although Herbert originally identified nine people as being in his health information network, one of his health information network members, Wanda, was only willing to be observed, and thus was not included as a participant in this present analysis (Table 4.1 provides a description of participants’ consent).  Herbert and the eight individuals in his health information ego network were selected for this analysis because of the substantial data (interview, field note, and demographic data) I had on each person, and because their data helped to answer the research questions for this analysis. Data Collection   The research questions for this analysis included: (1) “What roles do institutional and close interpersonal power dynamics play in shaping the flow of health information in social network interactions?” (2) “How do people advocate for their own health or the health of others in social network interactions (e.g. what does this look like)?”  98   For this present analysis, I searched through the data from the larger analysis looking for particular codes that answered my research questions.  In all, I identified 14 codes that informed this analysis (e.g. “advocating against power for one’s own health;” “challenging/rejecting/evaluating health information;” “double checking health information;” “describing exterior factors that affect one’s health;” “how somebody describes themselves or their social role” (see Table 6.1 for all 14 codes that informed the analysis).  These codes were found within the individual and focus group interview data, as well as the field note data that was collected for the larger analysis.   Interview data.  I pulled on coded interview data from the larger analysis that derived from questions that identified the nature of relational power in the participants’ lives and that explored how social structural conditions might influence the participants’ understanding and use of health information, including the role that informal and formal relations play in this process.  I also drew on coded data that derived from questions that explored the participants’ identities and roles they take up in social network interactions, and how this influences their interactions around health information.  I also pulled on coded data that derived from questions that explored if participants ever advocate for their health or the health of others, and if there is any network influence on this health advocacy or if people sometimes act independently of the influencing pressures, feelings, attitudes within a network.   Field note data.  For the larger analysis I made observational notes as I followed Herbert throughout his day to day life, as well as those he interacted with in his health information network over the course of a year.  From this field note data, I drew on coded data that focused on the nine participants included in this analysis and that were attentive to: (1) the intersection of power and gender on one’s health maintenance literacy practices, as well as my observational 99  notes that focused on various subtleties in regards to identities and roles that are performed in a network; (2) any conversations that illustrated how institutional health maintenance literacies are re-created at the local level into vernacular forms; (3) how individuals sometimes advocate for their health or the health of others; and (4) any relationships I perceived among health maintenance literacy, health advocacy, and a network.  In addition, I used coded data where I recorded multiple situations where I observed people acting independently of the influencing pressures, feelings, attitudes of a network, and what this looked like.    Demographic data.  For the purposes of this analysis, I also drew on the nine participants’ demographic data that was collected for the larger analysis.  I examined participants’: (a) age; (b) gender; (c) town or city they lived in, and for how long; (d) native language; (e) language spoken at home; (f) languages they read or wrote; (g) citizenship status; (h) highest level of schooling completed; (i) occupation; (j) how many hours a week they worked; (k) if they volunteered anywhere, and how many hours a week; (l) number of children; (m) number of people in household; (n) if they had a computer in their home; (o) marital status; (p) average household annual income; (q) ethnic background; (r) if they had health care related benefits; (s) if they had a general practitioner, and so forth.  The complete demographic survey can be found in Appendix B. Data Analysis   For this present analysis I drew on 14 codes from the 94 codes that derived from the larger item analysis (LeCompte & Schensul, 1999b) described in the methodology Chapter 4.  The 14 codes, that can be found in Table 6.1, were related to phenomena of power and agency in social network interactions around health information that were found within the individual and focus group interview data, as well as the field note data that was collected for the larger 100  analysis.  Using the ethnographic qualitative analysis approach described in detail in the methodology Chapter 4, I then engaged in pattern analysis and structural level analysis in order to answer my research questions (LeCompte & Schensul, 1999b).  I cycled back and forth between literacy as social practice theory, critical theory, and the coded data in order to identify patterns and regularities in the ethnographic qualitative data (i.e. interview transcripts, field notes, and demographic data) (Barton & Hamilton, 1998).  For example, drawing on critical theory I considered Bakhtin’s (1986; 1993) identification of "authoritative discourse” when exploring how participants described how they trust the advice of professionals unequivocally. Concentrating on the themes of power and agency in the flow of health information through a network, I checked the three data sources for any reference to power dynamics across all nine individuals included in this analysis.  The process of triangulation revealed patterns as responses, items, events, or themes from the various sources of data corroborated one another (LeCompte & Schensul, 1999a).  For example, assertions made in regards to relational power dynamics in interview transcripts were verified or cross-checked by the field note data.  I wrote analytic memos during each data analysis session that included my interpretations, insights, and questions about the coded data, and the patterns that emerged through my analysis of the data.  I also drew on the demographic data gathered about gender, ethnicity, age, language competency, and socio-economic attributes, which was helpful when exploring how these factors influence the ways health information is exchanged through interactions.  As more and more patterned pieces were assembled, a conceptual picture came together that answered my research questions (LeCompte & Schensul, 1999b).   I then manipulated this larger conceptual structure further by exploring interrelationships among all of the codes, always formulating and reformulating the data into a model that 101  captured flow and interconnectivity between the initial codes and concepts (LeCompte & Schensul, 1999b).  In an attempt to avoid rendering the fluid nature of social relations into aggregated discrete past events, I stayed true to the essence of the data by conceptualizing the data as being embedded in a process of continuous time.  Continuous time consists of sequential dyadic events or interactions whose representation should unfold as a continuous social process (Moody, McFarland, & Bender-deMoll, 2005).  Viewing the unfolding of social relations in continuous time, it became apparent how a health communication network developed through spurts or built slowly and steadily, or reflected repeated ritual behaviours that mix moments of order and chaos (Moody et al., 2005).  This iterative and recursive thinking often led to new insights, which led to revised or new codes or themes that highlighted the construct of interactional change across time and space, the changing nature of identity, micro-level agentive acts of resistance, and the malleability of power relations - all which shape the flow of health information through a network.  Following this initial analysis, I developed broader themes that involved blending many of the initial codes into finer tuned themes that captured similar conceptual dimensions.  These broader themes, for example, were named: “flows of institutional health knowledge;” “flows of interpersonal relational health knowledge;” “interpretation of one’s social position.”  The following results are based on these data collection and analytic methods. Results Individual Agentive Factors Shaped Institutional Power Dynamics to Shape the Flow of Health Information Through a Network Although participants trusted authoritative health knowledge, an in depth examination of the data provided insights into how health information flowed between health professional and 102  participants in complex ways.  Authoritative health knowledge was filtered by participants through their own creative integration of authoritative health information with other forms of knowledge.  My analysis revealed that this flow of institutional health knowledge was also mediated by other individual agentive acts, such as thinking critically about the health information and voicing rights and opinions related to promoting one`s own health or the health of others.     Participants trusted authoritative health knowledge.  It was clear from the analysis that all of the participants trusted the advice of health professionals (i.e. health professionals and health researchers) and their expert knowledge.  Participants expressed various reasons why they trusted the advice of health professionals, describing how: (a) health professionals do not try to sell them products; (b) the information they provide is personalized to the individual; (c) they are specialized, and well trained; and so forth. Herbert described to me why he valued the knowledge of a health professional:    I trust the science world, I trust the medical world and the studies they do.  Like I give  them the benefit of the doubt that they know a lot more about it than I do.  So, I will  listen to that advice for sure.   Herbert’s trust in the medical world and his expressed lack of confidence about health information appeared across the data sources, such as in his health maintenance literacy practices diary, informal audiotaped conversations, the field notes, and the individual interviews.  Participants often distinguished their own health expertise from the expertise of health professionals, highlighting Barton and Hamilton’s (1998) assertion that what is culturally valued and privileged knowledge and expertise in the local realm is often subject to different criteria from what counts in the professional or academic realm.  103    Participants balanced and integrated expert health information with other forms of knowledge.  Although the participants trusted the advice of health professionals, they balanced this information with other sources of knowledge.  One of these forms of knowledge derived from social interactions outside of the health professional realm.  For example, Amber, who I observed in different scenarios as outspoken about health issues, stated that although she valued her general practitioner’s advice “too much,” she tried to balance the health information she received from him by integrating what he advised, with her personal experience and the opinions or differences in opinions of others:    I think that that’s just as important because you never know what kind of a tidbit    somebody’s going to have for you… I do value what my doctor has to say, but I also   really value experiential information… so you know, this person has done that, so they   know, right.     Kourtney also emphasized in an interview how being influenced by health experts is a “perception,” and how her understanding of health information is also shaped by other individual factors, such as reading books:    I am influenced by health experts, but I would say that is more a perception.  Obviously   I am totally shaped by my background and everything.  I am somebody if I want to know   about something I will read an entire book about it.  I won’t read an article in a    newspaper because they will skim over and not give me the information that I would   want.      Daniel, who had suffered from colitis for the past three years, had learned to balance health information from various sources, such as from his GP, his naturopath, his friends, his 104  family, his girlfriend, the scientific literature, and the ways his body felt to him.  This balancing and integrating of health information from various sources appeared across the data.   Participants mediated the flow of expert health information through a network by thinking critically about the information.  Some participants also questioned and thought critically about health experts’ knowledge and skills, which seemed to shape how they interpreted expert health advice and how they mediated the flow of health information in a social network.  For example, Christie pointed out that although she valued health experts’ opinions, she did not accept their health information in a neutral and uncritical way: “Expert knowledge is knowledge that I take into account and work with but don’t accept unflinchingly, I guess, or uncritically.”   Shanti, an occupational therapist, described in an interview how she would foremost listen to the advice of a health professional, but also at the same time questioned their competence stating: “I question them a bit more because through work, have seen lots of really bad doctors. They are prone to error…they’re just humans like all of us and they don’t know the answers to everything either.”   Over lunch, at a Chinese restaurant in Milltown, Amber told me how she questioned the ethics of medicine.  She described an instance when she thought critically about the ways expert health information represents the values, beliefs and interests of the institution of medicine, after she went into a lengthy labour with her son, which resulted in an unwanted C-section to speed up the birthing process:   After that, I realized that when I went in for my daughter, I was, like, you know what? I  am controlling my own destiny now.  Because I don’t think that our healthcare system 105   set up anymore for the best of the people. I think it’s set up based on the bottom line,  dollars and cents.   Amber reported communicating this critical thinking with others in her informal network:   Especially with women who are having babies. They’re pumping babies out of that  hospital. If you don’t like the service that you’re getting, or you don’t agree with what  they’re saying, you’ve got to say something. You’ve got to nip that in the bud when you  can. I totally promote that.   The questioning or critical thinking about expert health knowledge, and macro level systems of institutional knowledge, often led to participants confronting or challenging health experts and/or discussing their critical reflections with others in their network in an empowering way, mediating the flow of information from the health professional to the patient.   The flow of expert health information through a network was mediated by acts of health advocacy that were always contextualized by power relations.  My analysis of data also revealed participants overtly and orally asserting their rights or opinions related to promoting their own - or others - health and well-being, describing how they spoke out against a situation or person that had more power than they do.  For example, Shanti, an occupational therapist, described in an interview how she orally questioned a physician who prescribed her client Oxycodone, an opioid drug.  She described how she was concerned because:   They’re known to be addictive.  They’re known to cause all these problems and he’s- like, that’s the very first thing he went to.  And I was, like, seriously?  And I even said,  like, are you sure there’s nothing else he could take?    The physician then responded that because the patient had hepatitis C he was not able to take any other pain medications because they could harm his liver.  Disgruntled, Shanti decided that 106  she could not question his opinion because she interpreted herself as not having the appropriate medical expertise:    So maybe that really was the only thing.  But I was still questioning it.  Like, you hear  everything about these people relying and then getting stuck on taking pain medications.   And yet you’re still promoting it… I personally don’t know if it was anything more than  that, that he could have been taking, so after that (the physician’s explanation of his  clinical reasoning) I could not question him more.  In another instance, Christie advocated for her own health when she had a recommended bone scan at age 50 to see if she had osteopenia.  She described how:  The numbers came out that supposedly I have osteopenia, which is one-you know,  which is sort of a mid-range diagnosis between healthy bones and osteoporosis. So the  GP that I had was recommending medication for that. I did a lot of research on that-a  lot, actually-and came to believe that basically, this was a diagnosis that is created by  the pharmaceutical companies in order to get women hooked into…osteoporosis  medication before they really need it.  Based on the research Christie did, and the other medical consultations she sought out, she described how she went back to her doctor and said “Thanks, but no thanks.”  Her physician then complied with her assertion, and they decided together to monitor her bone health annually.  In this instance, Christie balanced the health advice from her physician through her own lens which was informed by scientific research and professional second opinions, and then asserted her opinion related to promoting her own health.  Christie’s GP was receptive to her assertion and encouraged the flow of health information between them by creatively integrating 107  Christie’s opinion and her initial professional recommendation, and proposing an alternative healthcare option.   I selected these examples from the analyzed data to highlight for the reader the complex ways that the flow of expert health information was mediated by individual acts of health advocacy.  These agentive acts were initiated by the participant, but how this assertion flowed through a network was highly contingent on the interlocutor’s response and reflexive of the power dynamics embedded in that interaction. Relational Power Dynamics Inherent to Close Network Relations Shaped the Flow of Health Information through a Network   In this analysis, micro level close network interpersonal power dynamics appeared to shape the flow of health information in nuanced and subtle ways.  Although these power dynamics were less overt than institutional power dynamics, they appeared to be integral to micro level social interactions (Dunbar, 2004) that shaped the flow of health information.  The analysis revealed patterns that suggested the ways pathways of health information exchanges within close informal relational structures were dismantled or hindered in response to participants’ desires to preserve the integrity or quality of their informal close relations.  In addition, well informed and well intentioned health advice was reconstructed in informal network interactions due to the interplay of interpretations of self and social roles, which were always embedded in subjective and inter-subjective power dynamics.  The flow of health information stopped if it threatened to disrupt the balance or integrity of a close network relation.  My analysis of the data revealed that close informal ties in health information social networks sometimes stopped talking about a health topic if it threatened to disrupt the cohesion, harmony, or integrity of close network relation.  For 108  example, Roxy, Kourtney and Herbert were close friends who I observed throughout my year in the field regularly spending time together playing board games, going hiking, going to see movies at the theater in Milltown, etc.  Roxy captured how she, Kourtney, and Herbert negotiated micro level power and interpersonal dynamics when she described, in a friendship network focus group interview, how the three friends used to have arguments about spirituality and religion but decided to stop talking about it: “I just remember incidents where we all got in a significant argument about it (spirituality), and then I would say there was no point in talking about it anymore…(We) just have just totally different opinions about it.”  In order to maintain the harmony and cohesion within their friendship network, the three friends described to me in a friendship network focus group interview how their spiritual conversations then shifted in direction and flowed only between Kourtney and Herbert - who shared similar religious beliefs and backgrounds.    Through the analysis I could see how the flow of health information dismantled if individuals interpreted the other, in a close network relation, as not accepting their health advice.  For example, Kalie (Herbert`s brother`s long-term girlfriend) described her relationship with Herbert as being sibling like and having a quality of comfort; similarly to how she described her relationship with her own brothers.  She described that although she was concerned about Herbert’s deteriorating teeth, she did not press the issue with him after she shared her opinion with him.  Kalie therefore preserved the harmony in their relationship by bringing the flow of interactions around a health topic to a halt.  Kalie described how she respected that Herbert had his reasons for not listening to her:   We have kind of already talked about it.  The fact that he does not go to the dentist, and  he gets his teeth pulled, I have definitely told him like, ‘Herbert your teeth are pretty 109   precious and I would not just get rid of them.’  But, he definitely did not listen to that.   But that is fine, it is totally his decision, and his reasoning is that he does not want to  spend the money on it, and I guess that I just have a totally different perspective on  that… he has reasons and he thinks that they are valid.  Herbert`s interactions with his close friends also highlighted how the disruption of the flow of health information in close network relations were embedded in power dynamics that had dynamic interactive nature.  For example, Herbert, who reportedly had a pattern of falling in love quickly and becoming rapidly disillusioned by his dating partner`s faults, frustrated his close friends who were often subjected to hearing about his emotional ups and downs related to dating.  Kourtney described to me over coffee at a local cafe in Milltown how she found it challenging to discuss with Herbert his approach to dating because he would not listen to her: “…I am always trying to instill this realism with him.  It’s really hard.”  During my time in the field, I observed how Herbert appeared to ignore his friends’ relationship advice and jump into a new relationship again quickly.  My observation was corroborated in his health maintenance literacy diary when he wrote in an entry (after having known Shanti for 3 weeks): “I really like Shanti, and I anticipate great things with us.  Problems I have had in the past in relationships just seem to not exist with her.  Our personalities and likes just mesh with each other.”  I then recorded in my field notes how he seemed to diffuse the rising interpersonal conflict within his friendship network by deciding not to talk about his new relationship with his friends.  When I asked Herbert, in a friendship network focus group interview, why he did not talk about his new relationship with his friends he explained that: “I won’t talk that much about the person I’m dating now because I feel like a broken record.  So I just kind of let time prove itself or what it is prove itself.”  The example above illustrated how health information did not flow within a 110  friendship network due to: (a) Herbert’s friends interpreting him as not accepting their health advice, (b) Herbert not using the information his friendship ties shared with him in a way that was originally intended (i.e. by not following their advice at all), and (c) Herbert not talking anymore about a health topic that he interpreted as disrupting the harmony in his friendship network.  I found throughout the data that the flow of health information in close network relations was sometimes disrupted due to inherent relational power dynamics.   Interpretations of social roles and different gradients of interpersonal power dynamics shaped the flow of health information in a close informal network.  Through the analysis, I could see that, although participants often trusted the health advice from close informal network ties, they did not always follow their health advice because they interpreted themselves as: stubborn, set in their own ways, not always doing what they know is good for them, and so forth.  For example, Shanti’s data highlighted how interpretations of familial social roles and nuanced interpersonal power dynamics are integral to a mother/daughter relationship.  She described how although she knows her mother’s health advice is always right, as her daughter she simply did not want to follow her advice:      My mom, she-when she gives me health advice, like, sometimes I have a hard time  taking it.  Even if I do know it’s the right thing to do.  I just don’t want to, like-my mom is  the type of person that’s always right, and she’s just a very intelligent person…so it can  be, like, frustrating.  Like, damnit, why are you always right, woman?   My analysis of the data highlighted how closely structured local social relations and interactions are complex and nuanced – they can be oppressive, disruptive, supportive, or resistant to and of individuals’ needs as they serve different functions and purposes (Barton & Hamilton, 1998) within the social activity domain of health maintenance.   111   In many instances across the data, health knowledge and expertise were not singular preeminent factors that played into why informal close ties integrated and used the health advice that flowed between them – as different gradients of interpersonal power dynamics also played a role.  For example, one evening while making pasta dinner at Herbert’s apartment, Shanti (an occupational therapist) described how she gave Herbert (her boyfriend) informed advice about how to treat a groin injury, but he did not listen to her advice immediately.  Herbert then chimed in and told me how he instead double checked her advice by researching how to treat a groin injury on the internet, and then realizing her advice was accurate - he decided to follow her instructions.  When I asked Shanti in private about her reaction she said: “I think he’s more just, like, find out on his own and if you don’t tell him to do something, he’ll do it, maybe.”  Across the data there were rich instances that similarly highlighted how the flow of health information in micro level informal interactions were shaped by: deeply subtle and complex interpretations of self and social roles, subjective and intersubjective interpersonal power dynamics, and personal factors (e.g. age, gender, educational level, relationship status, economic status), which were always changing throughout time. Summary of Results  My analysis of data highlighted how interactions around health information were never discrete events, but rather embedded in chains of social interactions that were always contextualized by layers of intersecting institutional and interpersonal power dynamics.  In the following Discussion chapter, I will discuss in more detail my interpretation of the meaning of the major themes found in this results chapter.    112  Table 6.1 List of all 14 Codes that Informed Chapter 6 Analysis   1. advocating against power for one’s own health 2. challenging/rejecting/evaluating health information 3. double checking health information 4. changing one’s mind about health advice 5. describing exterior factors that affect one’s health 6. how somebody describes themselves or their social role 7. critiquing the health care system 8. deciding not to share health information 9. experiencing barriers to accessing health promoting resources and/or health services 10. feeling one has a lack of knowledge of health information 11. not following one`s own health advice 12. not modeling the health behaviour of somebody else 13. ignoring or rejecting patient advocating for one’s own health 14. supporting patient advocating for one’s own health        113  CHAPTER 7  DISCUSSION Limitations One limitation of this study that must be borne in mind by readers is that the findings cannot be generalized beyond the limits of this ethnography.  It follows in the tradition of other ethnographic studies of literacy in that it focuses on the particular and the local. This study needs to be understood as an ethnographer’s exploration of knowledge construction around health information in one small social network of adults documented in a particular space and point in time.  Instead of a unifying theory or generalizable findings  of health maintenance literacy that can be applied broadly to other communities, this work offers a contribution to theoretical understandings of literacy by linking health maintenance literacy to how people make meaning around health information in their day to day life and how this process flows and interlaces through network communications.  Researchers will find that each community and each interaction will be uniquely different and may be shaped, for example, by different “social factors” such as the beliefs and values that people share socially that are culturally embedded.    As well, researchers might find that there are other components I have not identified in terms of the interactive meaning making process around health information and how this phenomenon is mediated by a range of modes of communication.  Another limitation of this study is related to the private nature of health information.  I found that the participants were more likely to report some interactions around health topics (e.g. birth control, chronic pain, depression, etc.) when they were in private with me.  For example, although Kourtney was close friends with Roxy she had never shared her experience of depression with her.  I was honoured when Kourtney described to me over coffee one day 114  how she struggles with depression and that she had only interacted with her family and Herbert on this particular health topic.  As the study went on, it occurred to me that some topics of health are discussed more openly amongst social network ties (and in the presence of a researcher), such as discussions that occurred on health issues related to nutrition, orthotics, allergies, stress-management, and so forth.  Whereas other interactions that occur in private spaces (e.g. between intimate partners or between physician and patient), and that center on health topics considered sensitive (e.g. sexuality, anxiety, loneliness, etc.), were often reported to me in the privacy of an individual interview or one on one interaction.  As I spent time in the field, I began to appreciate the delicate nature of health information and welcomed with gratitude any instances where participants trusted me to share the more the more private instances of their interactions around health information.  In order to facilitate this, I periodically planned to meet with participants over coffee or lunch where they had the chance to interact with me in a discrete scenario and, when they felt comfortable, share with me reported interactions around health information that I could not be present for.    Given this limitation, a strength in this study design was how the use of multiple data sources allowed me to generate insights into interactions around health information that occur in both public spaces as well as more private and enclosed social spaces.  The various data collection techniques were therefore essential in this study where day to day interactions around health information occur in different layers of social life.  With this understanding of the very personal nature of health information, I did not pressure or pursue the individuals who expressed discomfort with my area of inquiry – interactions around health information – and who did not feel comfortable consenting to different aspects of the data collection involved in this study.   115  Social Networks and Meaning Making around Health Information Although the results presented in Chapters 5 cannot be generalized beyond the ethnographic study, they do provide insights into the ways social network interactions contextualize and mediate health maintenance literacy behaviors, beliefs, values and practices. The use of social network and ethnographic research methodologies allowed me to explore closely human-to-human interpersonal interactions around health information as the unit of analysis of human activity (Wertsch, 1998).  This approach made visible some of the ways network members interact around health issues and information and the ways that social network interactions can contextualize and mediate the exchange of health information.  The social network sociogram presented in Chapter 5, illustrates the abundance of social activity that can exist in social network interactions within the social activity domain of health maintenance. Drawing on a social network analysis orientation I was able to identify who was in Herbert’s health information ego network, and then plot who all these individuals interconnect with around the exchange of health information.  Although the focal participant was situated in a low SES rural community, social networks expanded beyond the local context to include dispersed network connections across various geographic and social spaces.  This cautions us of the labels we bring to communities (e.g. low SES) and the individuals’ who reside within that community. In this study, individuals are embedded in a social collective with social network member offering different sources of knowledge and capital.  This is the nature of the social network approach, which draws attention away from individual attributes, such as low SES, to focus on relations and the patterns they form (Marin & Wellman, 2010).  My analysis also highlighted how, primarily, oral communications in a small social network of adults functioned as an immaterial cultural tool that shaped mediated action (Wertsch, 1998) in 116  the social activity domain of health maintenance.  This immaterial cultural tool (i.e. spoken mode) was used in ways that were shaped by the various interactive factors people brought to meaning making around health information, which was contextualized by formalized institutional and close interpersonal dimensions of power and authority. In Chapter 5, the qualitative ethnographic analysis gave texture to the sociogram by providing insights into how people engage in social network transactions within the social domain of health maintenance.  This qualitative ethnographic analysis provided insights into how the construction of the meaning of health maintenance literacy emerges through interpretations of how people think about themselves, how they think about the other, concepts of how they interpret the quality of that interaction, and what their embodied understandings are.  My in-depth qualitative analysis also provided rich descriptions of how people brought multiple and overlapping layers of individual and social factors to social network interactions around health information.  I found that these interconnected and mutually interdependent elements comprised meaning making in regards to social network interactions around health information, which were contextualized by exterior factors.  It is important to re-emphasize that meaning making in social network interactions around health information in this small social network of adults transpired in chains of socially embedded life course events that were embedded in rhythms of network change throughout time.  Contextualizing the data as evolving over time, rather than in a discrete snapshot of an interactive moment, is a key component for understanding how people move fluidly in and out of different social networks interactions around health information.   The exploration of the meaning people attribute to health information in this particular context and how meaning unfolds in dynamic interpersonal interactions gives richness to my 117  observation that social interactions around health information in everyday life were primarily orally mediated, and less frequently mediated by print.  We can see from this data that health maintenance literacy goes beyond individual aspects – such as reading and writing ability or engaging in individual literacy events (e.g. reading about health information and not talking about what one has read with others) – which highlights the intrinsic social nature of meaning making around health information.  There is evidence in this data to suggest that interactions around health information move through interpersonal social interactions in abundant and creative ways.  We can see in this data how the sources and content of health information exchanged by people situated in sociocultural settings are heavily contextualized in interpersonal network interactions.  A deeper exploration into these interpersonal interactions challenges us to see beyond surface level exchanges (such as the content and sources of health information exchanged) by presenting detailed explanations into how meaning emerges in interpersonal interactions in the social activity domain of health maintenance.  I found that that there is an intricacy and uniqueness of each social interaction and a complexity that underlies mediated action in the social activity domain of health maintenance.  It is therefore not enough to make blanketed claims that all literacies are “social”.  This analysis reveals that what is actually happening involves dynamic interactive elements that comprise meaning making around health information; an intricate interconnected phenomenon that is always unfolding and evolving due to its embededdness in the natural rhythms of living and being.  This orientation carves the way for new definitions, research approaches, adult health education programs, patient education materials, recommendations for providers, and so forth that embrace the ever changing nature 118  of meaning making, and of health maintenance literacy as it unfolds within the intricate layers of social life. Power, Agency, and the Flow of Health Information in a Social Network  The analysis presented in Chapter 6 was designed to focus on the ways that power and agency manifest themselves in a social network, and how this channels the flow of health information in interconnected social relations.  One of the major goals of this analysis was to understand the nature of health maintenance literacy practices and the patterns of social relations that frame knowledge and meaning making around health information.  Although the way that social relations are constrained within relations of power is considered to be unobservable phenomenon (Street, 1993; Barton & Hamilton, 1998), we can see from the data how we can infer the roles of institutional and informal power dynamics through a close look at the ways people interact around health information in complex fluid sociocultural environments.  Although the immaterial cultural tool of spoken language appears only momentarily making the materiality of this cultural tool difficult to grasp (Wertch, 1998), spoken interactions around health information become more visible when we observe how they flow through different interpersonal landscapes for the purposes of maintaining one’s health.   This data suggests that we cannot fully understand health maintenance literacy, and the interconnection with one’s health and human activity around health without embedding it in a conceptualization of practices (e.g. beliefs, attitudes, feelings social relationships), and how these practices are shaped by power dynamics. Analyzing the data in such a way that accounts for dynamic social processes as they are embedded in chains of interactions (rather than interactions that are aggregated and discrete from one another), makes it possible to garner new understandings about how power takes form in social network interactions around health 119  information.  This analysis sheds some light into how power is produced and distributed in different sociocultural spaces to shape health maintenance literacy practices, such as within everyday close network interactions and within larger macro systems of power.    We can see from the data presented in Chapter 6 how when health information flows in situated environments it is never a singular linear one-directional phenomenon (i.e. transmitting health information from the mind of one person to another), but rather it is an interactive phenomenon that has an essence of plurality as health information is distributed amongst social network ties, interpreted within individuals’ knowledge systems, and shaped by other individual and interpersonal factors.  These insights add to the conversation presented by Nutbeam (2000; 2010) about critical health literacy, as it is evident in this analysis that critical thinking about health information is not an individual skill involving a critical analysis of health information that one can obtain in order to act on health determinants in predictable ways, but that the way critical thinking about health information flows in sociocultural environments is complex, and is often hindered or enabled by the ways different power and knowledge systems are embodied and played out in social relations.   In Chapter 6, for example, my analysis highlighted how health information did not flow directly from health professionals into the receiving mind of the participants, but rather was interpreted and redefined through the lens of each participant amongst broadly defined sources of knowledge.  Human action is therefore better thought of as moments of action, rather than a separate process or entity that exists in isolation and the relationship to sociocultural context is always apparent (Wertch, 1998).  This was captured when Shanti (an occupational therapist) described how she thought critically about expert health advice and advocated for her client in an interaction with a physician, but how this dialogue came to an abrupt halt due to inter-120  professional power dynamics and hierarchical struggles embedded in the context of medicine (Foucault, 1982).  Although Shanti advocated for the health of her client, and attempted to open up dialogue about alternative medications, the physician’s perceived hierarchically superior opinion did not invite interpretation or communication, rendering the flow of health information static, past, and finished (Bakhtin, 1986, 1993).  By invoking certain cultural tools (e.g. authoritative discourse) we gain some insights into how one’s actions take on a kind of power and authority (Wertsch, 1998). Implications for Theory, Research, and Practice  Implications for theory.  Orienting our theoretical lens to account for how health maintenance literacy is an interactive socially embedded process can help us better understand how learning and meaning making around health information is a process that is constantly changing and undergoing transformation (Freire, 1970).  Health maintenance literacy thus includes the essential construct of interactions between people and the different gradients of power that contextualize these interactions.  As individuals are always embedded in relational and institutional power dynamics that shape the flow of health information through a network, it is essential that our theoretical approach always account for this complex interactive process, and the intrinsic nature between agency and power (Giddens, 1979).    Implications for research.  In Chapter 5, “Meaning Making in Social Network Interactions around Health Information,” it was apparent that individuals’ “personal factors” (e.g. SES, age, gender, etc.) played a role in shaping how they accessed, understood, communicated, and used health information in their social network interactions.  These “personal factors” were only one element that shaped the relational meaning making process around health information, as there were also shared dynamic social interactive factors, 121  interpretations of self and other, embodied knowing, external societal forces, and institutional and relational power dynamics.  Future research could broaden our understanding of the different elements that were found in Chapter 5 to comprise meaning making in social network interactions.  While we can isolate one element for analysis and exploration, all of these elements were found to comprise phenomenon of meaning making around health information and are thus not meant to be understood separately.  In addition, although I only focused only on oral and print modes of communication as a starting point to investigate the process of meaning making around health information, others could broaden this focus and explore how the interactive meaning making process around health information is mediated by a range of modes of communication (e.g. images, body language, tone of voice, etc.).  Given the strong role of context in this study it would be valuable to replicate this study in different sociocultural contexts to learn more about how meaning is made in day to day interactions around health information, and the multifaceted ways institutional and interpersonal power dynamics shape the flow of health information through networks.  There is still much research to be done, for example, that uncovers the complex ways that formal and informal power dynamics shape the way health information is taken up and used by people in diverse sociocultural contexts.  It is advisable for future studies to employ an ethnographic research design using a social network analysis orientation to explore how health maintenance literacy occurs in dynamic sociocultural systems within a specific domain of human activity, health maintenance (Vygotsky, 1987; Wertsch, 1998).  Future research, that explores the dynamic patterns of interaction around health information in different sociocultural contexts, will result in a range of health education programs that are fined tuned to addressing dynamics of power that flow within these contexts.  It will thus be beneficial if future research is also conducted 122  that explores what these educational programs look like and how or if they are working and taken up by learners in diverse sociocultural contexts.   Implications for practice.  Practice is a very broad term and can have multiple meanings.  Relative to this study, practice has broad implications and can include, for example: (a) patient doctor communication, (b) inter-professional health care team communication, (c) community based health education programs for low literate populations, (d) health education in public schools, (e) adult literacy and health information classes in rural community contexts, and so forth.  Individuals in networks.  Literacy and health education program models must expand from a focus on the individual to embrace adults as individuals who exist in a web of social relations.  As suggested by Fingeret (1983), it is advisable that program developers spend time in communities exploring network subcultures, and to embed educational approaches within an understanding of the context of existing social groups that individuals reside in.  In reality, however, this might be excessively time consuming.  This study provides some insight into how meaning making around health information takes form within fluctuating social networks, and therefore encourages practical approaches that go beyond the individual to account for how individuals interpret and act on health information in complex webs of interrelations.  A practical example that implements this broadened focus might be to use peer groups to help patients adhere to a treatment plan, such as having a family member or friend commit to watching a patient take their medication every day (Rosenberg, 2011).   With the right advancements in technology, I believe that there is also potential to integrate health information approaches that reach beyond the individual to account for the broader social networks they reside in.  Some recent innovations in technology and healthcare 123  that mobilize and build on existing social connections to improve people’s health are: (a) social networking technology that complements telehealth systems (telehealth is the use of remote information and communication technologies between healthcare provider and patient) and leverages the power of close network relations (e.g. family and friends) in monitoring a patient’s health condition (Weitzel, Smith, Lee, de Deugd, & Helal, 2009); and (b) Internet based support groups that mobilize peer support around the management of chronic health conditions.  “Peer support is so effective in part because of the non-hierarchical, reciprocal relationship created through the sharing of experiences and knowledge with others who have faced or are facing similar challenges” (Heisler, 2006, p. 8).  Beyond a transmission model of health information.  Insights from this study encourage literacy and health education efforts that avoid top down models that focus on assessment of skills, and instead contextualize instruction within learners’ lives.  One way to do this is to work with learners to create materials and activities that reflect their backgrounds, interests, and experiences (Jacobson, Degener & Purcell-Gates, 2003; Muth & Kiser, 2008).  When working with individuals and communities we might consider an integrated approach that moves beyond transmitting health information neutrally or focusing on skills (e.g. word recognition, vocabulary knowledge, pronunciation, comprehension, decoding, etc.).  A more integrated approach might include, for example, ways of teaching about health information that draw on different modes of communication (e.g. drawings, drama, song, video, etc.) that reach into the social meanings and uses of health information.  Embracing the logic that health maintenance literacy is socially situated will propel us to merge simple transmission model and skills focused interventions into more socially attuned interventions that are linked to the various dimensions of the social aspects that shape health maintenance literacy.  These two 124  results chapters described the essence of some of these social formations in context so that others are encouraged to approach health maintenance literacy education from a holistic perspective.   Accounting for power dynamics.  This study highlights how social network interactions matter and, although pragmatic reading skills, health communication skills, and critical health information skills need to be learned, I recommend that we  extend our thinking to recognize that these are cognitive processes always embedded and played out in the complex and messy dynamics that are innate to interpersonal relations.  Broadly speaking, it is important to design health information clinical and educational programs that focus not just on reading and writing skills, communication skills, or critical health information skills, but that also account for how these processes are always embedded and actualized in the dynamics of social networks and flows of different gradients of power.  The key would be to promote deep reflections and awareness of the social aspects within which health communication takes place in clinical and educational practice.  For example, although the formal curriculum of medical school stresses interdisciplinary practice, collegiality, and patient-centred care, the hidden curriculum of medical school sometimes transmits hierarchical norms and values through implicit day to day interactions that medical students are exposed to by clinical instructors.  This hidden curriculum occurs outside of the explicit didactic teaching within medical schools’ lectures, grand rounds, and seminars and can include hierarchical attitudes towards nurses and other health care workers, violations of confidentiality, use of inappropriate language, and an inability to work with others (Mahood, 2011).  These cultural norms are reflective of hierarchical power structures embedded in the context of medicine that can contribute to an unconscious socialization process of medical 125  students, which can ultimately influence future patient care and work place culture.  Medical education might consider including a component within educational curriculum and clinical training that involves preceptors’ and medical students’ reflexive thinking in regards to the role that professional hierarchy, interpersonal power dynamics, social roles, identities, values, beliefs, and behaviours play in health information interactions within the social context of the clinical encounter.    An underlying insight from this research is that future clinical and educational programs need to shift awareness to the ways that power dynamics shape the flow of health information through formal and informal networks in various social contexts.  Such a shift in how we conceptualize meaning making around health information opens up an area of research, not extensively explored outside of this study.  A reconceptualization of clinical and educational programs could have serious implications – moving us away from simplistic insulated transmission models of health maintenance literacy skills to deeply reflexive understandings of complex dynamic interactive processes as they unfold in social life, always accounting for the ways that power relations are integral to the constitution of health maintenance literacy practices.         126  CHAPTER 8  CONCLUSION  The ultimate goal for this research was to establish empirical evidence that highlights the unfolding of meaning making around health information as it is mediated by social network interactions.  Drawing on a range of theories of language and discourse, I was able to explore, with this research, some of the social aspects of meaning making around health information. This exploration revealed that the ways people understand and use health information is deeply nested in social and cultural networks, which are shaped by both relational and institutional power relations.    This research aimed to illuminate the interactive process by illustrating the meanings and uses of health maintenance literacy in the context of a small social network of adults.  Providing evidence for how health maintenance literacy is known, defined, and practiced within a small social network of adults, stresses the role of social relations in the construction of meaning of health information for individuals and communities.  Writing these two results chapters helped me explore and then to clearly articulate the perspective that I bring to meaning making within the social activity domain of health maintenance - one that is infused with multiple realities, social interaction, meaning making, and power dynamics. The Promise of the Social Network Analysis and Ethnography  Meaning making.  One of my goals was to contribute to the strand of literacy research that grounds itself in an interface of power processes and local practices, by attending to the meanings and uses of health maintenance literacy as it is situated in social networks in a rural community context, and dispersed across various geographic and social spaces.  My other goal was to contribute to a shift away from the predominant deductive orientation in social network 127  analysis research that tends to reduces cultural richness to 1s and 0s, and foregoes attention to the processes of interpretation and meaning construction that unfold in social network interactions (Mische, 2011).    The current shift towards humanistic and interpretive methodologies in social network analysis focuses on the role of symbols, meanings, emotions, text, cultural frames, and cognitive schemas when analyzing social processes (Mohr, 1998).  A significant finding in the fifth chapter, entitled “Meaning Making in Social Network Interactions around Health Information,” was the meaning that those in this study attach to social relations (e.g. such as ‘trust’ or ‘care’), and how this relates to their understandings and use of health information.  This insight, attuned to meaning making around health information, offers new understandings in regards to how social and cultural processes shape health maintenance literacy events.  It is my vision that with a new basis for understanding the relationship between social networks meaning making within the social activity domain of health maintenance, others will be encouraged to make further contributions to this area of inquiry by conducting social network analysis and ethnographic research that explores the ways individuals construct and practice health maintenance literacy in different localities of situated human interaction.  These two results chapters highlight how ethnography offers rich qualitative data and grounding for network analysis, allowing us to see how people interact in complex and fluid environments (White & Johansen, 2005).   Agency and power.  A shift towards networks involving actors, actions and temporally ordered self-constructions departs from traditional formal social network analysis and is intimately connected to human agency (Franzosi, 1998).  “Agency does not refer to a series of discrete acts combined together, but a continuous flow of conduct” (Giddens, 1979, p. 55).  128  How people interpret themselves and their social role is created not only in activity and movement across social space, but also in the ways people are offered particular positions in interaction, time, and space, and how they take up or resist those positions (Butler, 1997).  Presented with such an offer, a person can either accept the position in whole or part, or refuse it (Bourdieu, 1991; Foucault, 1978).  In the sixth chapter, entitled “Power, Agency, and the Flow of Health Information in a Social Network,” the participants defined themselves through the health maintenance literacy practices they engaged in, but they also defined themselves through the health maintenance literacy practices they did not engage in, or resist.  The analysis presented in the sixth chapter thus highlighted how acts of resistance to health information destabilized and decentralized institutional and relational power dynamics.  Drawing on ethnographic local explorations and the chains of interaction that a social network analysis orientation emphasizes, it was apparent that the flow of health information was re-directed, stopped, and recreated due to diverse network interactions that are contextualized by power dynamics.  Time.  By taking an analytic approach that took into account the temporal dimensions of people’s lives, I had the opportunity to engage with historically and empirically based research into social action and agency that is at once temporal, relational, and cultural, as well as institutional, material, and macro-social.  Ethnographic and social network analysis research in general presents a methodological challenge in regards to capturing social relations, such as conversations that occur in real time, as they are often rendered by the researcher into aggregated discrete past events.  I suggest that it is more appropriate to conceptualize social relations in continuous time, as it accounts for how “networks may develop by spurts or build slowly and steadily, or how they may reflect repeated ritual behaviours that mix moments of 129  order and chaos” (Moody et al., 2005, p. 1209).  Dynamic social relations contain dimensions of relational pace (e.g. seconds, weeks, decades…), or rate of change in relations (e.g. fast, slow, accelerating…), often containing traces of irregularities.  The meaning of the terms pace and change in relations will depend on each unique social context, and vary across types of relations (Moody et al., 2005).   For the purposes of this research I thus drew on a concept of continuous renditions of time, which consists of sequential dyadic events or interactions that unfold as a continuous social process.  This perspective helped me understand, for example: (a) the overlapping and changing nature of people’s interpretations of self, social roles and interpretations of the other and (b), interactional meaning making across time, in relation to understanding and utilizing health information.  In general, I concur that social theory must acknowledge, as it has not done previously, time-space intersections as essentially involved in all social existence (Giddens, 1979, p. 54).  To achieve a multiple timescale analysis I chose a meaningful way to capture social network dynamics, which was through analyzing flows of information through a social network; allowing for the importance of past relations and the crisscrossing of space-times.  I believe this dissertation contributes new and fresh ideas in common with the recent cultural turn in social network analysis (Mische, 2000; 2011).  In addition, I hope to have rendered visible the influence of power relations on individual’s meaning making within the social activity domain of health maintenance, contributing to the field of literacy that has tended to render cryptic or unobservable power relations and social practices (Barton & Hamilton, 1998).  This dissertation offers a systematic framework and complementary methodological tools to make visible the social nature of health maintenance literacy practices in the day to day lives of people.  Finally, I believe the combination of social network analysis and ethnography 130  offers new perspectives towards understanding macro and micro level structural processes and how social ties are embedded in multiple dimensions of interconnectivity that create meaning making around health information. Closing Thoughts  This dissertation contributes to both the field of literacy and social network analysis by embedding the interplay of subjective and intersubjective interpretive constructions that underlie meaning making around health information; contextualized within rich layers of situated social activity.  What distinguishes in particular this study’s findings is the significance of relational meaning making processes around health information within the social activity domain of health maintenance, and the ways this phenomenon unfolds in in the intricacies of a rhythmic social collective.   I believe that difference and variety are fundamental to knowledge building and that health maintenance literacy needs to not only be understood at the local level, but anchored within explorations of the complex dynamics that unfold between interconnected individuals around the interactive meaning making process.  Although this study does not offer generalizable findings or a unifying theory about health maintenance literacy, I felt that it did provide some rich contextualized insights and grounding theoretical concepts that describe the complex social phenomenon that influences meaning making around health information in one social context.  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Beyond reciprocity: Exchange around literacy in adult basic education.  Adult Basic Education, 1(2), 79-97.    145  Appendix A Complete Social Network Survey (1 of 14 pages)   D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2  Social Networks and Health Maintenance Literacy Study Social Network Surveys  I am interested in the ties between people who are connected to each other in the community of Milltown.  Please fill out the surveys below and return them to me.        146  Appendix A Complete Social Network Survey (2 of 14 pages)  SNA Survey 1: Name Generator  List 10 people from whom you receive health information (family member, friend, physician, dietician etc.).  Please provide their names.  Please start with the person you feel closest to (#1). 1.   2.  3.  4.  5.  6.  7.   147  Appendix A Complete Social Network Survey (3 of 14 pages)  8.  9.  10.  Are any of these people connected or are they close to each other?  Please describe:  Social Network Analysis Survey 1B: Name Interpreter  I would like to ask you questions about the people that you just listed.  Person #1:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________ 148  Appendix A Complete Social Network Survey (4 of 14 pages)  Person #2:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #3:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #4:  Relationship to respondent__________________ 149  Appendix A Complete Social Network Survey (5 of 14 pages)  What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #5:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #6:  Relationship to respondent__________________ What is his/her occupation_____________________  150  Appendix A Complete Social Network Survey (6 of 14 pages) What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #7:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #8:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ 151  Appendix A Complete Social Network Survey (7 of 14 pages)  How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #9:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #10:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________ 152  Appendix A Complete Social Network Survey (8 of 14 pages)  Social Network Survey 2: Name Generator  List those in your social network that you share health information with (this does not need to be people that you are closest to).    1.  2.  3.  4.  5.  6.  7.  8. 153  Appendix A Complete Social Network Survey (9 of 14 pages)  9.  10. Are any of these people connected or are they close to each other?  Please describe:  Social Network Analysis Survey 2B: Name Interpreter  I would like to ask you questions about the people that you just listed. Person #1:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________ Person #2:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ 154  Appendix A Complete Social Network Survey (10 of 14 pages) How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #3:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #4:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________ 155  Appendix A Complete Social Network Survey (11 of 14 pages)  Person #5:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #6:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________ Person #7:  Relationship to respondent__________________  156  Appendix A Complete Social Network Survey (12 of 14 pages)  What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #8:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #9:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ 157  Appendix A Complete Social Network Survey (13 of 14 pages)  Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________  Person #10:  Relationship to respondent__________________ What is his/her occupation_____________________ What is his/her gender__________________ Where does he/she live ________________________ How long have you known him/her _____________________ How often do you see him/her ______________________ How often are you in touch by phone or internet ___________________        158  Appendix A Complete Social Network Survey (14 of 14 pages)  Out of the people in your entire network (friends, family, colleagues, medical professionals, etc.): (1) Which people do you rely on for health matters related to you own gender? (2) Which do you rely on for a health emergency? (3) Which of these people rely on you for a health emergency? (4) Whose attitudes, beliefs, or pressures about health influence you the most?   (5) Whose attitudes, beliefs, or pressures about health influence you the least? (6) Who do you influence the most with your attitudes, beliefs, or pressures about health? (7) Who do you influence the least with your attitudes, beliefs, or pressures about health?  I would like to ask you questions about whether or not you engage in any online health forums involving discussions, private emails or social media interactive tools?   Name of site: __________________________ How often you go to it: ______________________ How often you communicate with others: ____________________ What topics of health do you discuss the most: ___________________ Who influences you the most on this site: _________________________ How often do you communicate: _____________________________ Do people know your identity on this site (Y/N) 159  Appendix B Complete Demographic Survey (1 of 3 pages)  D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2   Social Networks and Health Maintenance Literacy Study Demographic Information (To follow the social network survey)  Date: _______________ Name: ____________________ Age: _______________________ Gender: ______________________ Country of birth: _________________________    160  Appendix B Complete Demographic Survey (2 of 3 pages)  Town you live in.  Please state for how long: _________________________  Native language: ____________________________  Language spoken at home: ____________________________  Languages you can read or write: ____________________________  Are you a Canadian citizen: ____________________________  If no, what is your status: _______________________________  Highest level of schooling completed: __________________________  Occupation (if you are a homemaker or student please state this.  If you are retired, or unemployed please state this and list your former occupation: __ If you work, do you work full time or part time.  How many hours a week?:_____ Do you volunteer anywhere.  Please describe: ________________________   161  Appendix B Complete Demographic Survey (3 of 3 pages)  Number of children: ________________________  Number of people who live in your household: ______________________________  Do you have a computer in your home: _____________________________  Married/Single/Divorced/Separated/Widowed/Common Law: _____________________________  Average household annual income (approximately): ________________________  Most people in Canada think of themselves as Canadians but also partly identify themselves based on the ethnic background of their ancestors. What would you say is the main ethnic background (or nationality) of your ancestors? (E.g., Australian, First Nations, English, Scottish, French, Korean, Slovakian, etc.) _______________________________  Do you have a health care benefits?  Please explain. _________________________  Do you have a general practitioner? _______________________________ 162  Appendix C  Open-Ended Interview Questions: Focal Participant (1 of 5 pages)    D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2  Social Networks and Health Maintenance Literacy Study Semi-Structured Interview Focal Participant  Note: The focal participant should have already read and discussed the Informed Consent letter with the interviewer and have signed the consent form.  General  1. How is your general emotional, mental, and physical well-being?  2. What kinds of health information do you engage with?   3. Where do you engage with this health information?    4. What sources do you receive this information from?     163  Appendix C  Open-Ended Interview Questions: Focal Participant (2 of 5 pages)  5.  How often do you engage with this health information?    Social Networks and Health Maintenance Literacy  1. What are your beliefs, values, and attitudes towards a particular health condition or practice?     2. With whom do you share health information and from whom do you receive health information?  (This could include your family members, friends, professionals, and acquaintances).   3. How frequently do you communicate with this person?     4. Are there social, cultural or emotional meanings that you associate with this relationship? Please explain.   5. Do you trust the advice this person gives you?   6. Are there social, cultural or emotional meanings that you associate with the health related advice you are given?   7.  Do you find these interactions constraining, supportive or both?    8. How do the beliefs, values and attitudes of those in your network shape your use of health information or your health behaviours?  Please give examples.         164  Appendix C  Open-Ended Interview Questions: Focal Participant (3 of 5 pages)  9. How many people do you consult with before you make a health related decision?  Would these people know each other?  Social Networks and Identity  1. Can you remember any family narratives about health?  How do you integrate these into your health practices or use of health information?  Please provide examples.  2. What kinds of roles do you think you have in the different social groups you are connected to?  How do you think others would describe you?  3. How does your role in a network influence your health?  4. How does your role in a network influence your health decisions?    5. How does your role in a network influence your understanding and use of health information?   6. When accessing or using health information do you draw on the help of others - or alternatively do you help others?  Are these actions associated with your identity or role in your community?  Please explain. 165  Appendix C  Open-Ended Interview Questions: Focal Participant (4 of 5 pages)  Social Networks and Power Relations  1. Are there any social, economic, or environmental conditions that influence your health either negatively or positively?   2. Are there situations where you cannot access health information for some reason?  Explain.  3.  Are there situations where you are not able to use the health information that you receive?  Please explain.  4. What role do informal (friends, family) or formal (experts) relations play in regards to your use of health information?  Social Networks and Gender  1.  Do you think your gender influences your health?  2. Do you sometimes only share or seek information with your own gender?  Please provide examples.  3.  Do you think your gender ever influences your ability to access and use health information?   166  Appendix C  Open-Ended Interview Questions: Focal Participant (5 of 5 pages)  Social Networks and Self Advocacy  1. Tell me about any health related decisions you have made independently of the values, attitudes, feelings and pressures from others or the advice from medical or institutional information.  2. Do people in your network influence either negatively or positively your self-advocacy?  (Do they constrain or enable yourself advocacy)  3. Do you ever go against people’s opinions and interpret and use health information in a way that is not recommended by others (family, friends, doctors, the media etc.)?                    167  Appendix D  Open-Ended Interview Questions: Ego Network Participant (1 of 4 pages)   D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2   Social Networks and Health Maintenance Literacy Study Semi-Structured Interview Network Participant  Note: Each participant should have already read and discussed the Informed Consent letter with the interviewer and have signed the consent form. Social Networks and Health Maintenance Literacy 1. What are your beliefs, values, and attitudes towards a particular health condition or practice?    2. With whom do share health information?  (This could include your family members, friends, professionals, and acquaintances).  3. How frequently do you communicate with this person?   168  Appendix D  Open-Ended Interview Questions: Ego Network Participant (2 of 4 pages)  4. Are there social, cultural or emotional meanings that you associate with this relationship? Please explain.  5. Do you trust the advice this person gives you?    6. Are there social, cultural or emotional meanings that you associate with the health related advice you share?  7. How do your beliefs, values and attitudes shape how someone in your network uses health information?  Please give examples.  8. How many people do you consult with when interpreting health information that you might later share?  Do these people know each other?    Social Networks and Identity  1. Can you remember any family narratives about health?  How do you integrate these into the advice you give others?  Please provide examples.  2. What kinds of roles do you think you have in the different social groups you are connected to?  How do you think others would describe you?  3. How does your role in a network influence the health of others?  4. How does your role in a network influence others’ health related decisions?                 169  Appendix D  Open-Ended Interview Questions: Ego Network Participant (3 of 4 pages)  5. How does your role in a network influence people’s understanding and use of health information?   6. When accessing health information do you draw on the help of others - or alternatively do you help others?  Are these actions associated with your identity or role in your community?  Please explain.   Social Networks and Power Relations  1. Are there any social, economic, or environmental conditions that influence your health and those in your network either negatively or positively? Please explain.  2. Are there situations where you cannot access health information for some reason?  Explain.  3.  Are there situations where you are not able to or do not want to share the health information that you know/receive?  Please explain.  4. What role do informal (friends, family) or formal (experts) relations play in regards to your own understanding of information?            170  Appendix D  Open-Ended Interview Questions: Ego Network Participant (4 of 4 pages)  Social Networks and Gender 1. Do you think your gender influences your health?  2. Do you sometimes only share health information with your own gender?  Please provide examples.  3.  Do you think your gender ever influences your ability to access and use health information?    Social Networks and Self-Advocacy  1. Tell me about any health related decisions you have made independently of the values, attitudes, feelings and pressures from others or the advice from medical or institutional information.  2. Do you think you influence the self-advocacy of people in your network either negatively or positively?   3. Do you ever give someone health related advice, but observe them using health information in a way that is not recommended by you?    171  Appendix E  Focus Group Interview Questions (1 of 3 pages)      D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2   Social Networks and Health Maintenance Literacy Study Focus Group Interview  Note: Each participant should have already read and discussed the Informed Consent letter with the interviewer and have signed the consent form.  1. How do you all know each other? 2. How long have you known each other? 3. What is the nature of your relationship (friends, acquaintances, relatives)? 4. How often are you in contact/communication?   172  Appendix E  Focus Group Interview Questions (2 of 3 pages)  5. How often do you exchange health related information?   6. Where and how do you exchange health information?   7. What types of advice do you give each other about health information?   8. Do you share similar health experiences?   9. How are your health practices or interpretations influenced by each other?   10. Do you sometimes disagree with the information that you share?    11. How do you perceive your roles in this network?  Do others here agree with this description?   12. How does your economic status, gender, age, education level influence how you either share or receive health information from each other?    13. Is there someone in this group who is considered an expert or that others go to most often for health related knowledge? Why do you trust their advice?  14. Is there someone in this group who often shares health information between people in the group?     173  Appendix E  Focus Group Interview Questions (3 of 3 pages)  15. Is there someone in this group who does not share or receive much health information from others?  16. Do you think you share similar or dissimilar beliefs, values, and attitudes towards a particular health condition?  17. Do you ever give someone health related advice, but observe them using health information in a way that is not recommended by you?    18. Do you ever use health information in a way that is not advised by others in this group?  What do others here think?                   174  Appendix F Focal Participant’s Health Maintenance Literacy Diary: Instructions (1 of 1 page)    D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2  Social Networks and Health Maintenance Literacy Study (Handed out to Focal Participant)   You are being provided with a diary for the duration of this study.  In this diary I would like it if you could record your health maintenance literacy practices (i.e. what you read and/or write or listen and/or talk about to in your daily life for different health maintenance purposes). Please fill in your diary once a week, or when you have a free moment.   It also would like it if you could save any health related artifacts that you accumulate in your daily life so that these events can be traced when I am not present.   Thank you,  Laura Nimmon 175  Appendix G Human Ethics Consent Form: Focal Participant (1 of 7 pages)     Consent Form: Social Networks and Health Maintenance Literacy   Attention: Primary Subject/Focal Participant  Principal Investigator: Dr. Victoria Purcell-Gates. Department of Language and Literacy Education, University of British Columbia. Canada Research Chair in Early Childhood Education.  Phone: 604-822-0105.  Co-Investigator:  Laura Nimmon.  PhD Candidate. Department of Language and Literacy Education. University of British Columbia.  Phone: deleted.    This research is for a doctoral degree in Language and Literacy Education.  This research is part of a thesis and therefore it will eventually become a public document.     D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2 Tel: 2-5788  176  Appendix G Human Ethics Consent Form: Focal Participant (2 of 7 pages) Voluntary Participation: Your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study.  Before you decide, it is important for you to understand what the research involves.  This consent form will tell you about the study, why the research is being done, what will happen to you during the study and the possible benefits, risks and discomforts. Purpose: The purpose of this study is learn about the ways people get and use their information about health related issues, and the ways social groups influence the flow of health information.  Many professionals in the field of health are calling for more research that will help them learn about rural communities and the role of social relationships in health maintenance literacy.  This study could have implications for health and education related theory, practice and policy in rural communities. You have been asked to participate because you live in the rural community of name.  I intend to learn about the ways different social networks in the community function in a way that shapes people’s understanding, and use of health information. Study Procedures: I would like to interview you to learn about how social networks contextualize and mediate health maintenance literacy.  I will be asking you about your day to day engagement with health maintenance literacy. I will also ask you with whom you share health information and from whom you receive health information, and the nature and   177  Appendix G Human Ethics Consent Form: Focal Participant (3 of 7 pages) meaning of these relationships. I will explore your beliefs, values and attitudes towards health maintenance literacy and how these might be shaped by people in your network – including your friends, family members, professionals, and acquaintances. I would like to audiotape the interviews so that I can remember later what you said. I would prefer to interview you in your home, but it is possible to have the interview in other places, if you prefer, such as a park or a library.  These interviews do not last very long, and can take place casually over several visits or in a more focused manner in one visit.  Each interview takes no more than about a half hour.  This can be arranged for your convenience.  I might also conduct a focus group interview once or twice with people in your social circle, which also would last no more than an hour. We encourage all subjects to refrain from disclosing the contents of the discussion outside of the focus group; however, we cannot control what other subjects do with the information discussed.  I will also give you small surveys throughout the study. These surveys will ask you who you talk to about health information, who you give health related advice to, and who influences your health related decisions beliefs, values, practices, and so on. I will conduct small surveys to gain information about your education level, gender, language competency, employment status, annual income, and so on. The surveys should take you 15 minutes or so to fill out.  As I spend time with you, I might unobtrusively audiotape health related talk in a variety of settings, such as at the pub, at the pharmacist, at work, or in the home.  I might also take my own notes about things I observe related to your understanding and use of health  178  Appendix G Human Ethics Consent Form: Focal Participant (4 of 7 pages) information. I would also like to document the visual environment, what you do with health maintenance literacy in different settings. Those who are not participating will not be photographed.  Your participation as I observe you will not require you to deviate from any normal activities. I will also have you keep a diary of your health maintenance literacy related practices (like what health information you read throughout the day). The diary is meant to be filled in once every couple of days or so.    Potential Risks: This research has the potential to involve some psychological harm such as anxiety, embarrassment, shame, or guilt feelings related to you describing situations related to your physical, emotional and/or mental health.  In order to minimize or manage the psychological risks for you, I have been in contact with a counseling service in the area. This list of appropriate, available, and affordable resources and counseling services will be handed to you prior to the initial interview.    Potential Benefits: Many professionals in the field of health are calling for more research that will help them learn about rural communities and the role of social relationships in health maintenance literacy.  This study could have positive implications for health and education related theory, practice and policy targeted at rural communities.  179  Appendix G Human Ethics Consent Form: Focal Participant (5 of 7 pages)  Confidentiality: Your name will be kept confidential to the maximum extent allowed by law and will never be revealed in any oral or written presentation of the results of the study.  All of the documents will be identified only with a code or pseudonym (a made up name for you) and will be kept in a locked file cabinet.  Also, the documents that are kept in a computer hard disk will be accessible only with a password and will be accessible only to the principal and co-investigator of this project.  The audiotaped files will be deleted from the recorder as soon as they are transferred to my computer.  The files will also be destroyed following the conclusion of the study after five years.  If I use any photos, I will not associate your image with your real name or any other information that might identify you.  I will protect the identity of each individual, his/her family and his/her community. You can request, however, that I use your real name if you would prefer this and consent to this. You can request, however, that I use your real name if you would prefer this.   Please speak with me if this is the case so I can get your written consent to do this, provided there is no unacceptable risk to you. Remuneration/Compensation: As an expression of my appreciation, I will offer you a gift certificate for a local cafe.  Each gift certificate is worth $10. This token of appreciation is not dependent on completion of the project.   180  Appendix G Human Ethics Consent Form: Focal Participant (6 of 7 pages)  Contact for information about the study: If you have any questions or want more information with respect to this study, you can contact me, Laura Nimmon (co-investigator) at deleted.  Contact for concerns about the rights of research subjects: If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598 or if long distance e-mail to RSIL@ors.ubc.ca.  Consent: I hope that you will permit me to include you in this study.  Nevertheless, you do not have to give your consent.  If you choose not to give your consent to participate in this study, there will be no negative consequences for you.  In addition, after giving consent, you may withdraw if at any time during the course of the study with no negative consequences.  If there are any questions in the interview that you do not with to answer, you do not have to do so. You also do not have to answer all the questions on the survey forms.  You can also decline my presence at any socially related events I request to attend, as well as decline that I include certain people in your social group in this study. You can decide to withdraw from this study at any time, and your data can be withdrawn prior to analysis.   181  Appendix G Human Ethics Consent Form: Focal Participant (7 of 7 pages)  Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study Social Networks and Health Maintenance Literacy.   ____________________________________________________ Subject Signature     Date   ____________________________________________________ Printed Name of the Subject signing above  I will provide you with the results of the study so please provide a mailing address at the bottom of this consent form so I can mail you a report on the findings.     Name:______________________________  Street: ______________________________  City: ________________________________  Postal Code: _____________________________    182  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (1 of 8 pages) Note – The consent form for the expanded health information network participant was adapted slightly from this version.  It did not request permission to interview participants or request participants fill out a social network or demographic survey.   D e p a r t m e n t  o f  L a n g u a g e  a n d  L i t e r a c y  E d u c a t i o n  Ponderosa Annex “E” Rm. 100 – 2034 Lower Mall Rd. Vancouver, BC  V6T 1Z2  Consent Form: Social Networks and Health Maintenance Literacy Attention: Ego and Expanded health information network Participant  Principal Investigator: Dr. Victoria Purcell-Gates. Department of Language and Literacy Education, University of British Columbia. Canada Research Chair in Early Childhood Education.  Phone: (delete).  Co-Investigator:  Laura Nimmon.  PhD Candidate. Department of Language and Literacy Education. University of British Columbia.  Phone: (deleted)  183  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (2 of 8 pages) This research is for a doctoral degree in Language and Literacy Education.  This research is part of a thesis and therefore it will eventually become a public document.   Voluntary Participation: Your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study.  Before you decide, it is important for you to understand what the research involves.  This consent form will tell you about the study, why the research is being done, what will happen to you during the study and the possible benefits, risks and discomforts. Purpose: The purpose of this study is learn about the ways people get and use their information about health related issues, and the ways social groups influence the flow of health information.  Many professionals in the field of health are calling for more research that will help them learn about rural communities and the role of social relationships in health maintenance literacy.  This study could have implications for health and education related theory, practice and policy in rural communities. I intend to learn about the ways different social networks in the community function in a way that mediates people’s understanding, and use of health information.     184  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (3 of 8 pages)  Study Procedures: I would like to interview you to learn about how social networks contextualize and mediate health maintenance literacy. I will explore your beliefs, values and attitudes towards health maintenance literacy and how these might shape how those in your network interpret and use health information – including your friends, family members, and acquaintances. I would like to audiotape the interviews so that I can remember later what you said. I would prefer to interview you in a quiet setting, but it such as a park, an office, or a library.  These interviews do not last very long, and can take place casually over a couple of visits.  Each interview takes no more than about a half hour.  This can be arranged for your convenience.  I might also conduct a focus group interview once or twice with people in your social circle, which also would last no more than an hour. We encourage all subjects to refrain from disclosing the contents of the discussion outside of the focus group; however, we cannot control what other subjects do with the information discussed.  I will also give you small surveys throughout the study. These surveys will ask you who you talk to about health information, who you give health related advice to, and who influences your health related decisions beliefs, values, practices, and so on. I will also ask about your education level, gender, language competency, employment status, annual income, and so on. The survey should take you 15 minutes or so to fill out. 185  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (4 of 8 pages) I also might unobtrusively audiotape health related talk you are engaged in (such as a conversation you are involved in at the pub, at the pharmacist, at work, or in the home).  I might also take my own notes about things I observe related to your understanding and use of health information. I might also document the visual environment, what you do with health maintenance literacy in different settings. Those who are not participating in this study will not be photographed.  Your participation as I observe you will not require you to deviate from any normal activities.   Potential Risks: This research has the potential to involve some psychological harm such as anxiety, embarrassment, shame, or guilt feelings related to you describing situations related to your physical, emotional and/or mental health.  In order to minimize or manage the psychological risks for you, I have been in contact with a counseling service in the area. This list of appropriate, available, and affordable resources and counseling services will be handed to you prior to the initial interview.   Potential Benefits: Many professionals in the field of health are calling for more research that will help them learn about rural communities and the role of social relationships in health maintenance literacy.     186  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (5 of 8 pages)  This study could have positive implications for health and education related theory, practice and policy targeted at rural communities.  Confidentiality: Your name will be kept confidential to the maximum extent allowed by law and will never be revealed in any oral or written presentation of the results of the study.  All of the documents will be identified only with a code or pseudonym (a made up name for you) and will be kept in a locked file cabinet.  Also, the documents that are kept in a computer hard disk will be accessible only with a password and will be accessible only to the principal and co-investigator of this project.  The audiotaped files will be deleted from the recorder as soon as they are transferred to my computer.  The files will also be destroyed following the conclusion of the study after five years.  If I use any photos, I will not associate your image with your real name or any other information that might identify you.  I will protect the identity of each individual, his/her family and his/her community. You can request, however, that I use your real name if you would prefer this.  Please speak with me if this is the case so I can get your written consent to do this, provided there is not unacceptable risk to you.    187  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (6 of 8 pages) Remuneration/Compensation: As an expression of my appreciation, I will offer you a gift certificate for a local cafe.  Each gift certificate is worth $10. This token of appreciation is not dependent on completion of the project. Contact for information about the study: If you have any questions or want more information with respect to this study, you can contact me, Laura Nimmon (co-investigator) at (deleted). Contact for concerns about the rights of research subjects: If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598 or if long distance e-mail to RSIL@ors.ubc.ca. Consent: I hope that you will permit me to include you in this study.  Nevertheless, you do not have to give your consent.  If you choose not to give your consent to participate in this study, there will be no negative consequences for you.  In addition, after giving consent, you may withdraw if at any time during the course of the study with no negative consequences.  If there are any questions in the interview that you do not with to answer, you do not have to do so. You also do not have to answer all the questions on the survey forms.  You can also decline my presence at    188  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (7 of 8 pages)  any socially related events I request to attend, as well as decline that I include certain people in your social group in this study. You can decide to withdraw from this study at any time, and your data can be withdrawn prior to analysis.   Your signature below indicates that you have received a copy of this consent form for your own records.  Your signature indicates that you consent to participate in this study Social Networks and Health Maintenance Literacy.    ____________________________________________________ Subject Signature     Date   ____________________________________________________ Printed Name of the Subject signing above    189  Appendix H Human Ethics Consent Form: Ego and Expanded Health Information Network Participant (8 of 8 pages)  I will provide you with the results of the study so please provide a mailing address at the bottom of this consent form so I can mail you a report on the findings.     Name:______________________________  Street: ______________________________  City: ________________________________  Postal Code: _____________________________          

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