Charting Caregiver Movement Using a Complexity Science Framework: An Emergent Perspective by Jennifer Anne Eve Krahe A Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Approved July 2013 by the Graduate Supervisory Committee: Gerri Lamb, Chair Linda Larkey Bronwynne Evans ARIZONA STATE UNIVERSITY August 2013 ABSTRACT Health and healing in the United States is in a moment of deep and broad transformation. Underpinning this transformation is a shift in focus from practitioner- and system-centric perspectives to patient and family expectations and their accompanying localized narratives. Situated within this transformation are patients and families of all kinds. This shift’s interpretation lies in the converging and diverging trails of biomedicine, a patient-centric perspective of consensus between practitioner and patient, and postmodern philosophy, a break from prevailing norms and systems. Lending context is the dynamic interplay between increasing ethnic/cultural diversity, acculturation/biculturalism, and medical pluralism. Diverse populations continue to navigate multiple health and healing paradigms, engage in the process of their integration, and use health and healing practices that run corollary to them. The way this experience is viewed, whether biomedically or philosophically, has implications for the future of healthcare. Over this fluid interpenetration, with its vivid nuance, loom widespread health disparities. The adverse effects of static, fragmented healthcare systems unable to identify and answer diverse populations’ emergent needs are acutely felt by these individuals. Eradication of health disparities is born from insight into how these populations experience health and healing. The resulting strategy must be one that simultaneously addresses the complex intricacies of patient-centered care, permits emergence of more localized narratives, and eschews systems that are no longer effective. It is the movement of caregivers across multiple health and healing sources, managing care for loved ones, that provides this insight and in which this project is i keenly interested. Uncovering the emergent patterns of caregivers’ management of these sources reveals a rich and nuanced spectrum of realities. These realities are replete with opportunities to re-frame health and healing in ways that better reflect what these diverse populations of caregivers and care recipients need. Engaging female Mexican American caregivers, a population whose experience is well-suited to aid in this re-frame, this project begins to provide that insight. Informed by a parent framework of Complexity Science, and balanced between biomedical and postmodern perspectives, this constructivist grounded theory secondary analysis charts these caregivers’ processes and offers provocative findings and recommendations for understanding their experiences. ii DEDICATION FJP ‘52 MJK ‘90 iii ACKNOWLEDGMENTS À mes trois reines, Dr. Lamb, Dr. Evans, and Dr. Larkey: vous m'avez accompagné à cette exploration de la transformation profonde de santé. Je vous dois ma propre transformation. iv TABLE OF CONTENTS Page LIST OF TABLES ................................................................................................................ ix LIST OF FIGURES ............................................................................................................... x CHAPTER 1 TRANSFORMATION ....................................................................................................1 Patient-centric. ............................................................................................ 2 Postmodern. ............................................................................................... 2 Through a lens, divided: Mexican American female caregivers. .................. 4 Overview of Chapter 1 ...........................................................................................4 Patient-centered care. ................................................................................. 6 The postmodern moment. ........................................................................... 7 Problem .................................................................................................................9 Increasing ethnic and cultural diversity. ....................................................... 9 Acculturation and biculturalism. ................................................................. 10 Health disparities. ..................................................................................... 12 Medical pluralism. ..................................................................................... 13 Rationale and Significance ..................................................................................15 Mexican Americans: Ethnic and cultural diversity. ..................................... 16 Mexican Americans: Health disparities. ..................................................... 16 Mexican Americans: Medical pluralism. ..................................................... 18 The female Mexican American caregiver. ................................................. 19 Purpose ...............................................................................................................19 Specific aims and research questions. ...................................................... 20 Research Approach .............................................................................................21 v Constructivist grounded theory. ................................................................. 21 Sensitizing concepts. ................................................................................ 22 Research approach and parent framework. .............................................. 25 Secondary Data Analysis ....................................................................................26 History....................................................................................................... 26 Methodological considerations. ................................................................. 27 Overarching questions. ............................................................................. 28 Researcher Assumptions ....................................................................................28 Definitions of terminology. ......................................................................... 31 Conclusion ...........................................................................................................33 Summary/significance of this research. ..................................................... 35 2 TRANSGRESSION? ..................................................................................................37 Literature review in grounded theory: the debate. ..................................... 38 Objectivist ............................................................................................................39 Constructivist .......................................................................................................40 Objectivist: Neither possible, permissible, nor desirable: Bring nothing. .... 40 Constructivist: Possible, permissible, and desirable: Bring everything. ...... 42 Situating Myself Within the Debate ......................................................................43 Decisions made. ....................................................................................... 43 My extant conceptual knowledge. ............................................................. 44 Literature Review .................................................................................................46 Acculturation/biculturalism. ........................................................................ 48 Medical pluralism. ..................................................................................... 62 Models of medical pluralism. ..................................................................... 64 Conclusion ...........................................................................................................76 vi Rapprochement: An epilogue. ................................................................... 77 3 EMERGING REALITIES ............................................................................................78 Substantive changes to the research question. ......................................... 80 Specific aims and research questions. ...................................................... 84 Purpose ...............................................................................................................85 Population of Interest ...........................................................................................85 Research Design .................................................................................................86 Methodology. ............................................................................................ 87 Secondary Analysis: A Prelude ...........................................................................89 Organizing frameworks. ............................................................................ 91 Life course perspective and complexity science. ....................................... 92 Sensitizing concepts. ................................................................................ 94 Demographic Data: Inclusion and Exclusion Criteria ........................................101 Approach to Data Analysis