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A community-based participatory approach to planning child and youth health services in north west British… Lindstrom, Ronald Raymond 2006

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A C O M M U N I T Y - B A S E D PARTICIPATORY APPROACH TO PLANNING CHILD A N D Y O U T H H E A L T H SERVICES IN NORTH WEST BRITISH C O L U M B I A : FINDING C O M M O N GROUND by R O N A L D R A Y M O N D LINDSTROM B.Sc, The University of British Columbia, 1972 M . S c , The University of British Columbia, 1986 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE F A C U L T Y OF G R A D U A T E STUDIES (Experimental Medicine) THE UNIVERSITY OF BRITISH C O L U M B I A August 2006 © Ronald Raymond Lindstrom, 2006 Abstract A growing recognition of the need for participatory health services research requires multiple stakeholder collaboration between researchers, clinical service providers, managerial and policy decision-makers, and the public. Recent Canadian provincial and federal reports support the need for participatory inquiry, yet little is being done in practice. This thesis explores a community-based participatory research process for planning child and youth health services and proposes methods to close the gap between research and practice. The study took place in the North West Health Service Delivery Area of British Columbia. This large geographic region represents over one-quarter of the provincial land mass, yet is home to <90,000 people. Approximately 30% are children and youth 19 years of age and under. Approximately 22% of the residents are Aboriginal. A participatory research approach was used with a mixed methods design. The priority component was qualitative. Qualitative data were collected and integrated through a unique sequence of methods, including semi-structured interviews, focus groups, and a search conference. Qualitative data were analyzed using a constructivist grounded theory method. The nested component was quantitative. Quantitative data were accessed from a provincial health services utilization database. Geographic information systems (GIS) software was used as a tool to map selected data, which was incorporated into the search conference. Three general conceptual categories emerged from the data: perceptivity about, emotivity generated by, and inclusivity in, the health system. Two core conceptual categories emerged: boundaries and boundary objects. Three knowledge boundaries were introduced: syntactic, semantic, and pragmatic, building upon and supporting empirical research on innovation and technology development. This study proposes a fourth knowledge boundary: phronetic. The characteristics of boundary objects occupying this phronetic boundary are fluid, real-time, i i participatory, and collaborative in locally-situated, multi-stakeholder, boundary-crossing settings. These boundary objects facilitate the melding of knowledge and action in ways that are relevant to stakeholders in their local realities. A conceptual framework is proposed to guide and unify participatory research and planning processes. This research is expected to lead to more effective multi-stakeholder, community-based approaches to the planning and development of network models for child and youth health services. table of Contents A B S T R A C T ii T A B L E OF CONTENTS iv LIST OF T A B L E S viii LIST OF FIGURES ix LIST OF ABBREVIATIONS AND ACRONYMS xi ACKNOWLEDGEMENTS xiv C H A P T E R O N E : I N T R O D U C T I O N 1 THE PROBLEM l THE HEALTH SERVICES PLANNING ENVIRONMENT IN BRITISH COLUMBIA 2 The Child and Youth Health Services Planning Environment in BC 3 The Child and Youth Health Services Planning Environment in North West B C 4 MOVING BEYOND THE RHETORIC ; 5 THE AIM OF THIS STUDY 5 THE RESEARCH QUESTIONS 6 THE SIGNIFICANCE OF THIS STUDY 8 DELIMITATIONS OF THE STUDY 9 M Y PHILOSOPHICAL ORIENTATION, BELIEFS, AND BIASES 10 My Professional Experience /1 My Academic Preparation 14 My Epistemological Self-Awareness 15 M y Conceptualization of Change 16 THE JOURNEY AND A ROAD MAP FOR THE DISSERTATION 18 The Journey 18 Intellectual 18 Technical 19 Geographical 19 Liminal 20 A Road Map for the Dissertation 21 SUMMARY 23 C H A P T E R T W O : R E V I E W O F T H E L I T E R A T U R E 25 INTRODUCTION '. 25 THE CANADIAN HEALTH SYSTEM 26 Federal Initiatives 27 Selected Provincial Initiatives 32 British Columbia Initiatives 33 THE BRITISH COLUMBIA HEALTH SYSTEM 34 The Northern Health Authority 38 Rural and Remote Health Services 39 PLANNING AND POLICY EFFORTS FOR CHILDREN AND YOUTH 44 National 44 British Columbia 46 COMPLEX ADAPTIVE SYSTEMS (CAS) 51 Introduction 51 Defining the Terms in CAS 52 Characteristics of Complexity and CAS 53 Relevance of CAS to Health Services Planning 55 PARTICIPATORY RESEARCH APPROACH 58 Community-based participatory research 59 RELATING COMMUNITY AND PARTICIPATION 60 POWER AND CONTROL 64 THE GEOGRAPHY OF HEALTH AND HEALTH CARE 66 iv An Overview of the Evolution of Medical Geography 6 6 The Geography of Health Care 6 7 Access and Utilization 67 Locality in Health Services 68 Special Considerations around Children and Youth 69 Place and Health 71 KNOWLEDGE TRANSLATION 7 4 C H A P T E R T H R E E : M E T H O D O L O G Y A N D D A T A A N A L Y S I S 8 0 RATIONALE FOR USING A PARTICIPATORY RESEARCH APPROACH 8 0 ETHICS APPROVAL PROCESS 8 1 GAINING ACCESS TO THE RESEARCH SITE 8 4 PARTICIPATORY RESEARCH IN A RURAL CONTEXT 8 7 MIXED METHODS DESIGN 8 8 Priority Qualitative Component 9 0 Nested Quantitative Component 9 0 SAMPLING PROCESS 9 1 D A T A GATHERING 9 5 Qualitative Component 9 5 Piloting the Semi-structured Interview Question Guide 96 Semi-structured Interviews 96 Focus Groups 99 Search Conference 102 Quantitative Component 1 0 5 B C Ministry of Health Services PURKFECT Database 105 D A T A ANALYSIS 1 0 8 Qualitative Component 1 0 8 Grounded Theory Approach 109 Constructivist Grounded Theory Method 112 Transcribing the Data 112 Coding Process 114 Open coding 114 Axial coding 115 Theoretical coding 116 Selective coding and constant comparative method 116 Theoretical Sampling and Theoretical Saturation 117 Memo Writing 119 Trustworthiness 1 2 0 Qualitative Authenticity Criteria 1 2 1 Fairness 122 Ontological Authenticity 123 Educative Authenticity 123 Catalytic Authenticity 124 Tactical Authenticity 126 Grounded Theory Criteria 128 Quantitative Validity and Reliability Criteria 1 2 8 Auditability 1 2 9 QUANTITATIVE COMPONENT 1 2 9 Using the PURRFECTDatabase and G1S to Map Child and Youth Health Service Utilization in the North West HSDA 1 2 9 Issues Related to the Analysis of Aggregated and Mapped Data 1 3 2 The Ecological Fallacy 132 The Modifiable Areal Unit Problem (MAUP) 133 C H A P T E R F O U R : F I N D I N G S I — T H E E M E R G E N T C O N C E P T S 1 3 5 INTRODUCTION 1 3 5 INITIAL FINDINGS 1 3 5 PERCEPTIVITY ABOUT THE HEALTH SYSTEM 1 3 7 Understanding the Provincial Health System 1 3 7 V Considering Issues in Health Services Planning 142 Addressing Practical Issues 144 Inter-sectoral 144 Inter-cultural 146 Priority health service needs 148 EMOTIVITY GENERATED BY THE HEALTH SYSTEM 1 5 4 Lacking Knowledge 1 5 5 Feeling Unheard 1 5 6 Experiencing Frustration 1 5 7 Reacting Censoriously 1 6 0 Taking Charge 1 6 1 INCLUSIVITY IN THE HEALTH SYSTEM 1 6 2 Seeking the Essence of Community 1 6 2 Perceptions about Community 163 Creating a Sense of Community 164 Pragmatic Issues 165 Wanting to Participate and Act 1 6 7 Feeling Need 168 Creating Conditions for Awareness 169 Creating Conditions for Connecting 169 Exemplifying Collaboration 170 T H E COMMON THREAD 1 7 1 Reflections on My Geographical Journey 1 7 1 EXPLORING DYADIC RELATIONSHIPS 1 8 2 INTRODUCING THE CONCEPT OF BOUNDARIES 1 8 7 C H A P T E R F I V E : F I N D I N G S II - B O U N D A R I E S A N D B O U N D A R Y O B J E C T S 1 8 8 INTRODUCTION 1 8 8 BOUNDARIES 1 8 9 BOUNDARY OBJECTS 1 9 1 BOUNDARIES AND BOUNDARY OBJECTS IN OTHER INDUSTRIES 1 9 2 CARLILE'S INTEGRATIVE FRAMEWORK—A DESCRIPTION 1 9 4 Syntactic Boundary and Boundary Objects 1 9 5 Semantic Boundary and Boundary Objects 1 9 5 Pragmatic Boundary and Boundary Objects 1 9 6 LEARNING FROM THE CLAY MODEL 1 9 6 KNOWLEDGE BOUNDARIES IN HEALTH SERVICES RESEARCH AND DELIVERY 1 9 9 HONOURING LOCAL PEOPLE AND KNOWLEDGE 2 0 1 TOWARDS A CONCEPTUAL MODEL OF KNOWLEDGE BOUNDARIES AND BOUNDARY OBJECTS 2 0 3 Knowledge Boundaries 2 0 3 Classifying Knowledge Boundaries in Child and Youth Health Services 204 Classifying Boundary Objects 210 Boundaries and Boundary Objects in the North West 2 1 7 Syntactic Boundary and Boundary Objects 218 Semantic Boundary and Boundary Objects 219 Pragmatic Boundary and Boundary Objects 219 Phronetic Boundary and Boundary Objects 221 Examples of Focus Groups' Perspectives 229 Examples of Search Conference Perspectives 229 Good and Bad Boundary Objects 230 Good boundary object, but not well-understood by others 231 Good boundary object, but unappreciated by those outside of Aboriginal culture 231 Good boundary object, but perceived as bad by Aboriginal users 232 Bad boundary object, lacking sensitivity to Aboriginal users 232 Bad boundary object 232 SUMMARY 2 3 3 C H A P T E R SIX: D I S C U S S I O N , I M P L I C A T I O N S , A N D C O N C L U D I N G R E M A R K S 2 3 5 INTRODUCTION 2 3 5 v i SUMMARY OF THE STUDY 236 DISCUSSION 238 Weaving Together the Conceptual Strands 239 Towards a Substantive Theory for Participatory Planning...:..: 241 Towards Double-loop Learning. 241 The Boundary Interfaces 242 Perceptivity about the Health System 242 Emotivity Generated by the Health System 252 Inclusivity in the Health System 257. Towards a Conceptual Planning Framework 263 IMPLICATIONS FOR FUTURE RESEARCH 268 Implications for Child and Youth Health Services Research and Planning 271 Implications for Inter-organizational Child and Youth Health Networks 274 Implications for Stakeholders 276 CONCLUDING REMARKS 280 REFERENCES 282 APPENDICES 320 APPENDIX A : LETTER OF INITIAL CONTACT 321 APPENDIX B : SAMPLING CRITERIA FOR PUBLIC/SERVICE RECIPIENT GROUP 322 APPENDIX C : CONSENT FORM 323 APPENDIX D: QUESTIONS TO GUIDE THE SEMI-STRUCTURED INTERVIEWS 326 APPENDIX E: QUESTIONS TO GUIDE THE FOCUS GROUPS 328 APPENDIX F : SEARCH CONFERENCE AGENDA 329 APPENDIX G l : NORTH W E S T B C 2003/4 M A P OF POPULATION A G E D 0-19 YEARS 332 APPENDIX G2: NORTH W E S T B C 2003/4 M A P OF POPULATION A G E D 0-19 YEARS N O T SERVED BY FORMAL M E N T A L HEALTH SYSTEM 333 APPENDIX H : NORTH W E S T CONFERENCE INVITATION 334 APPENDIX I: CERTIFICATES OF APPROVAL - BEHAVIOURAL RESEARCH ETHICS BOARD, THE UNIVERSITY OF BRITISH COLUMBIA 335 v i i List of Tables Table 1: Semi-structured Interviews - Stakeholders, Locations, and Dates 98 Table 2: Focus Groups - Stakeholders, Locations, and Dates 102 Table 3: Search Conference - Stakeholders, Location, and Date 104 Table 4: Estimations of the Number of Children and Youth with Significant Mental Disorders, and the Number who Receive or do not Receive Formal Mental Health Services by L H A in North West BC 153 Table 5: Dyadic Relationships 182 Table 6: Boundaries Identified in the Data 205 Table 7: Boundary Objects at the Syntactic Boundary Level Identified in the Data 218 Table 8: Boundary Objects at the Semantic Boundary Level Identified in the Data 219 Table 9: Boundary Objects at the Pragmatic Boundary Level Identified in the Data 220 Table 10: Boundary Objects at the Phronetic Boundary Level Identified in the Data 224 viii List of Figures Figure 1: British Columbia Health Boundaries (Map) 10 Figure 2: British Columbia 2001 Census Population by Dissemination Area Map 84 Figure 3: Northern Communities Map 172 Figure 4: A Typical Stretch of Highway between Kitwanga and Dease Lake (488 km) 174 Figure 5: Dease Lake Health Centre 174 Figure 6: A Narrow Portion, Along the Stikine River, of About 115 km of Gravel Road Connecting Dease Lake and Telegraph Creek 175 Figure 7: The Main Intersection near Telegraph Creek 175 Figure 8: The Stikine RiverSong Lodge in Telegraph Creek 179 Figure 9: The Tsimshian Storm Passenger/Supply Ferry 179 Figure 10: Hartley Bay 180 Figure 11: The Float Plane 180 Figure 12: Aerial View of Mountainous Territory and the Picturesque Inside Passage 181 Figure 13: Skidegate Health Centre, Skidegate, Queen Charlotte Islands (Haida Gwaii) 181 Figure 14: Carlile Integrated/3-T Framework 193 Figure 15: The Context of Aboriginal Ethics 214 Figure 16: Traditional Aboriginal Territorial Boundaries in North West BC 215 Figure 17: Relationship between Data, Information, Knowledge, and Wisdom 227 Figure 18: Chaordic: The Interfaces of Simple, Complicated, and Complex 244 Figure 19: Wisdom: The Interfaces of Data, Information, and Knowledge 247 Figure 20: Transdisciplinarity: The Interfaces of Disciplinarity, Multidisciplinarity, and Interdisciplinarity 249 Figure 21: Transsectorality: The Interfaces of Sectorality, Multisectorality, and Intersectorality 250 Figure 22: Transculturality: The Interfaces of Culturality, Multiculturality, and Interculturality 252 Figure 23: Phronetic Knowledge Boundary: The Interfaces of Syntactic, Semantic, and Pragmatic Knowledge Boundaries 254 Figure 24: Transitioning at Knowledge Boundaries: The Interfaces of Transferring, Translating, and Transforming Knowledge 255 Figure 25: The Interfaces of Boundary Objects: Repositories, Acts/Policies/Standards, Models/Maps/Plans/Projects, and Participatory Forums 256 Figure 26: Place: The Interfaces of the Province, North, and North West 258 Figure 27: Inter-organizational Networks: The Interfaces of Individuals, Departments/ Divisions/Centres, and Organizations 260 Figure 28: Collective Action in Qualitative Research Methods: The Interfaces of Interviews, Focus Groups, and the Search Conference 262 Figure 29: A Conceptual Framework to Guide and Unify Participatory Research and Planning in Health Services 264 List of Abbreviations and Acronyms ADTSPEC Local/Regional Referral Analysis A R Action Research ASUR Age-Standardized Utilization Rates BC British Columbia B C C H British Columbia Children's Hospital B C M C F D British Columbia Ministry of Children and Family Development B C M O H British Columbia Ministry of Health BCMOHP British Columbia Ministry of Health Planning BCMOHS British Columbia Ministry of Health Services BREB Behavioural Research Ethics Board [UBC] C & W Children's & Women's Health Centre of BC CAPHC Canadian Association of Paediatric Health Centres CAS Complex Adaptive Systems CBPR Community-Based Participatory Research CCASUR Continuing Care Age-Standardized Utilization Rates CCCHR Centre for Community Child Health Research CCHSA Canadian Council on Health Services Accreditation CCHSE Canadian College of Health Service Executives CEO Chief Executive Officer CFRI Child and Family Research Institute C H N L M F V Child Health Network of the Lower Mainland and Fraser Valley [of BC] CHSPR Centre for Health Services and Policy Research CHSRF Canadian Health Services Research Foundation xi CICH Canadian Institute of Child Health CIHR Canadian Institutes of Health Research CPRN Canadian Policy Research Networks E B D M Evidence-Based Decision-Making EIDM Evidence-Informed Decision-Making ESRI Environmental Systems Research Institute FNIHB First Nations and Inuit Health Branch [of Health Canada] FOIPP Freedom of Information and Protection of Privacy GIS Geographic Information System H A Health Authority HOSPCOMP Hospital Comparative Reports HSDA Health Service Delivery Area HSRC Hospital Services Restructuring Committee IRPP Institute for Research on Public Policy K T Knowledge Transfer or Translation [in this study the latter is used] K T E Knowledge Transfer and Exchange L C D D U local, complex, diverse, dynamic, unpredictable L H A Local Health Area LHIN Local Health Integration Network M A U P Modifiable Areal Unit Problem M O E Ministry of Education MSFHR Michael Smith Foundation for Health Research MSPREF Medical Service Plan Referrals N H A Northern Health Authority NHS National Health Service [UK] N W North West British Columbia PAR Participatory Action Research PEOPLE Population Extrapolation for Organizational Planning with Less Error PHSA Provincial Health Services Authority PR Participatory Research PRA Participatory Rural Appraisal PURRFECT Population Utilization Rates and Referrals For Easy Comparative Tables R E F E R R A L Summary Referral Patterns U B C University of British Columbia U K United Kingdom U R P H Y Utilization Rates by Health Program and Year VSTAT Vital Statistics Summary WRTC Western Regional Training Centre for Health Services Research xiii Acknowledgements I have had a wonderful journey since beginning my doctoral studies in 2001, culminating in this thesis. Many people and organizations have helped make this journey possible and I am indebted to each of them. To all of the participants in this study, thank you so much for the wealth of knowledge you have shared with me, without which, of course, none of this would have been possible. Your many perspectives and realities have demonstrated to me why a participatory approach is so important. To my supervisor, Dr. Robert Armstrong, and my entire thesis committee—Dr. Penny Gurstein, Dr. Michael Hayes, Dr. Theresa Healy, Dr. Michael Klein, Dr. Ying Macnab, and Dr. Nikki Shaw—thank you all so much for your time, knowledge, and support during my entire program of studies. You have guided me well. Dr. Armstrong, I particularly want to thank you for your constant support and encouragement. To all of my course instructors, in both regular coursework and directed studies, I thank you for the knowledge I have gained which formed the substantive basis for much of this research. Thank you, Katrina Pandak, for your excellent transcription services. You have unfailingly and so accurately transcribed the many, many audiotapes during the data gathering and findings phases of this study. Thank you, Sahba Eftekhary, for your assistance with the graphics. Similarly, Jenni Gehlbach, I thank you for your speedy and accurate editorial services during the final write-up stages of this study. I sincerely thank my entire family for supporting me in so many ways during these past five years of studies. Kathie, I especially thank you for your deep understanding and patience, in spite of your own hectic schedule. You were always there for me. xiv Finally, I thank all of my funders for providing the financial support that made this research possible: Canadian Institutes of Health Services Research—Institute of Health Services and Policy Research; Academic Enhancement Fund—Department of Pediatrics / Special Population Fund - Faculty of Medicine, U B C ; Northern Health Authority—North West Health Service Delivery Area; Western Regional Training Centre studentship funded by Canadian Health Services Research Foundation, Alberta Heritage Foundation for Medical Research and Canadian Institutes of Health Research; and, BC Ministry of Children and Family Development through the Human Early Learning Partnership, UBC. xv CHAPTER ONE: Introduction Journey - "an act of going from one place to another" (Concise Oxford Dictionary, 1995) T h e P r o b l e m Despite growing evidence in the academic and grey literature, including numerous federal and provincial commissions and reports on health reform, a participatory approach to planning health services has seen little uptake. Health system reform and redesign in British Columbia (BC) specifically included goals of community participation and local input into planning and decision-making (BC Ministry of Health Planning [BCMOHP], 2001a, 2002a; BC Ministry of Health Services [BCMOHS], 2005a; BC Royal Commission on Health Care and Costs, 1991). Yet, there is surprisingly little follow-through at the community level. Similarly, health services planning practices remain at odds with research evidence. As Gray (1997, p. 1) poignantly observes, "[a]t present, many healthcare decisions are based principally on values and resources - opinion-based decision-making; little attention has been given or is paid to evidence derived from research - the scientific factor." In this vein, the National Forum on Health (1997) warns of the gaps in, and misuse of, evidence. This report notes that means have yet to be developed to assist decision-makers, and highlights the demand by patients for greater involvement in decision-making. This study addresses the gap between actual practice and the research evidence on how to approach health services planning. It investigates the problem of how to effectively engage stakeholders at the local community, regional, and provincial levels of the health system in order to find practical solutions to improve service delivery to children and youth living in North West BC. The following sections in this chapter introduce and highlight a number of on-going challenges related to this journey, underscoring why this study is timely and relevant. T h e H e a l t h S e r v i c e s P l a n n i n g E n v i r o n m e n t i n B r i t i s h C o l u m b i a Patients should be at the centre of the health care system, and the system/services should be organized, coordinated and delivered around the needs of patients. The BC Legislative Assembly Select Standing Committee on Health Report (2001) reinforces this intent in its own words: "patients first". BCMOHP's New Era document (2001a) reinforces patient-centred health care, specifically that "[pjatient-centred care means finding a way [emphasis added] for government, unions and health regions to work together to ensure that patient needs come first." (2001, p. 14). However, the recommendations are silent on how to go about this. The New Era document explicitly states that high quality, patient-centred care is the provincial government's first long-term health goal. It also acknowledges three general categories of obstacles: (a) a history of inadequate planning and management, (b) the growing gap between what the public wants and what the system can deliver, and (c) a lack of sustainability. The three-year service plans (2002/03 - 2004/05) for both the [then] B C M O H P 1 (2002b) and the BCMOHS (2002b, p. 2) include: meeting public and provider expectations, and ensuring "appropriate and productive stakeholder participation [emphasis added] in the development of planning approaches in a newly configured health structure," The BCMOHP's Service Plan calls for "[i]nclusion of patient and public perspectives [emphasis added] in health planning and policy development." These intentions are extremely important and timely. However, a gap persists in how to go about it and, equally important, who will do it. Anderson & Boothroyd (1983) explored the differences and significance for planning in public agencies stemming from the lack of distinction between social planning (in communities, societies, and agencies) and corporate planning (how to rationally reach goals). They suggest that tensions will arise i f direction is solicited and tools used from the corporate planning world for ' The provincial government dissolved the B C M O H P shortly after it was created and its functions were largely re-incorporated into the B C M O H S . 2 what are social contexts. This may be the chronic difficulty experienced in BC. The former New Democratic Party attempted to engage in a social planning ethos during their tenure from 1991 — 2001, but barely got past the rhetoric stage in health services and systems planning. On the other hand, the Liberal government, commencing with their rise to power in 2001, has taken a corporate (business) stance and pushed for fast, fiscal bottom-line results in the health system. They risked using a corporate planning context at the expense of a social planning context. This was due to various perceptions that the community involvement approach failed under the previous political era, even though health reform has never been systematically evaluated in BC. Thus, it is important to recognize the difference between social and corporate planning. Either or both approaches may be appropriate, but this is largely dependent on where and what is being planned. The Child and Youth Health Services Planning Environment in BC Planning health services for children and youth poses even more complex challenges than for adults. Further to meeting the usual health service delivery needs of the general population, several requirements unique to children must be addressed, including: (a) the child/family unit; (b) voice and advocacy; (c) time-sensitive developmental imperatives; (d) issues around service transitions; (e) pediatric generalist, sub-specialty, nursing and other professional human resource availability; and (f) highly technical and centralized tertiary/quaternary care. Balancing competing needs with resource availability (human, technical, physical, and fiscal) presents significant challenges, especially in rural and remote areas of the province, such as the Northern Health Authority (NHA). This, combined with the ripple effect of restructuring, service consolidation, and changing hospital roles, such as local availability of pediatric beds, presents challenges beyond the purview and expertise of any individual perspective, professional discipline, government ministry, or public service sector. Indeed, ripple effects and challenges 3 did arise during reform, presenting a unique opportunity to understand and develop new insights into addressing these shortfalls. The Child and Youth Health Services Planning Environment in North West BC The NHA' s Health Service Redesign and Budget Management Plan 2003-04 to 2005-06 (NHA, 2003) identifies key priorities intended to align with the 2003/04 Performance Agreement with the BCMOHS. These entities are discussed in Chapter Two. A number of core public health programs are to be developed, including "an NHA-wide system of integrated services focusing on...child/youth/family" (NHA, 2003a, p. 3). This is to be accomplished through established "[mjultidisciplinary community health planning teams for Child Youth Family" (NHA, 2003a, p. 11). Additionally, this plan takes into account current provincial restructuring by the BC Ministry of Children and Family Development (BCMCFD), which could see two regional structures for children's services - Aboriginal and non-Aboriginal - the boundaries for which are planned to be coterminus with the N H A . The NHA' s community consultation exercise (NHA, 2004) unsurprisingly reiterated many of the same issues. For example, one of the conclusions about how community groups and other agencies could work together revolved around the need to improve communications within the N H A : Many ideas for improving this situation were voiced, the main one being that people are keen to see some sort of mechanism for improved and ongoing communications with Northern Health that would involve community input into decision-making and planning, and the ability, at least at some level, to deal locally with local needs (p. 20). Where children and youth were mentioned in the consultation report, the key issues facing this population group were not specifically highlighted, other than the crisis around youth mental 4 health services in the North West, and a need for a greater focus on the health of women and children. M o v i n g B e y o n d t h e R h e t o r i c The foregoing examples represent good intentions for patient-centred, collaborative, provincial health system reform. Yet, very little has changed on the ground where this effort was purportedly going to make a difference. Having been in the health services industry for a number of years, I suspected that this observation would hold true from multiple perspectives, including the public, clinical service providers, managers, and policy-makers. This was confirmed by participants during the course of this study. This inertia spans different government ideologies, many years, multiple perspectives, multiple jurisdictions, and speaks to the growing, but largely unheeded calls for action. There is an urgent need to move beyond good intentions - to actually do something tangible and relevant to those who provide, manage, and use health services at ground level. Numerous reports from other provinces and the federal level are outlined in Chapter Two, attesting to these issues in greater detail. T h e A i m o f t h i s S t u d y The aim of this study is to explore a community-based participatory process for planning child and youth health services in a rural area of BC, and to close the gap between what the research is saying and what is being practised. This will be accomplished through an emphasis on a multiple stakeholder, community-based participatory research and planning process. The study does not attempt to identify the actual health service needs. These needs will be identified through a sustainable, community-based planning process at the local level resulting from, and contiguous with, this study. While there was no guarantee at the outset, I expected that this research approach would help to empower community stakeholders and facilitate sustained action at the local level once the groundwork created by the study was completed. In this way, I 5 anticipated that the study would be relevant in three ways. First, as a participatory research approach, it would model how to go about child and youth health services planning at the rural local level in the context of, but not directed or dominated by, the broader health system. Second, this approach would facilitate action to address, be relevant to, and respectful of, the nuances of local communities throughout the North West. Third, this participatory research and planning process could be adopted in other jurisdictions in British Columbia, perhaps even more broadly. If successful, it could also serve as a model for collaborative planning in other population groups, such as the elderly who present comparable health service planning challenges at the other end of the life-cycle. T h e R e s e a r c h Q u e s t i o n s In qualitative research, it is not uncommon for the preliminary research question(s) to evolve and become more refined over the course of the study. This is especially true when (a) a participatory research approach is taken, (b) participants are invited to be co-researchers, and (c) there is an expectation of an emergence of ideas over time, as is the expectation here. The preliminary, central, multiple research question was initially posed as: What is the process by which child and youth health service needs can be identified and understood, how can this process guide the development and utilization of health services, and how can this process inform evidence-based practice by decision-makers? Indeed, the research question did evolve during the course of the study. The question of "what is the process..." was refined to: How does a participatory research process inform planning and guide stakeholders involved in child and youth health services in North West BC? I was made aware early in the data-gathering phase that a participatory approach was desired; less clear was how to effectively conduct it. In that respect, the study itself became a means, a 6 process, and a real-time journey for conducting research and creating action, together with the participants. This emergent role is discussed in the findings in Chapter Four. Additionally, there were three preliminary sub-questions: 1. How can a complex, adaptive systems lens assist in reframing multi-stakeholder conceptualization of the health system? 2. How can community be (re)defined, and how does multi-stakeholder involvement contribute to community-based participatory planning processes for child and youth health services? 3. What is the role of health care geography in understanding the spatial characteristics of health services utilization, and how can this be used in participatory planning processes? These sub-questions essentially stood; however, they were addressed from my perspective as researcher, not from the perspectives of the study participants as I had originally, and perhaps naively, envisioned. A l l of these questions were developed prior to determining the method I would ultimately use for data analysis: constructivist grounded theory. It is a characteristic of qualitative research, especially when generating theory from empirical data, to accommodate flexibility and allow decision-making to occur in real-time (Mason, 2002). Similarly, this characteristic is described by Lewis (2003, p. 47) as a "key strength.. ..a continuing process which calls for constant review of decisions and approaches." A constructivist grounded theory method requires the researcher to discover the main theme, category, or storyline emerging from the data provided by the study's subjects. As the study proceeded using multiple methods for data gathering, the line of questioning I used during subsequent data gathering stages became more closely aligned with my emergent thinking and that of the participants. 7 T h e S i g n i f i c a n c e o f t h i s S t u d y This study is significant in how it approaches the research problem, conducts the research, and links research and practice in order to address the complex health services issues facing children, youth, and families in North West BC. Equally significant is the on-going challenge of incorporating research findings into the "real world of health service delivery" (Saunders & Wanke, 1996, p. 34). As this study is concluding, it is noteworthy that the BC government has just recently publicly recognized, and de facto endorsed, a particular health services research strategy for children and families (BCMCFD, 2005a): Research confirms that collaborative planning and decision-making, and integrated service delivery for social programs that best reflect and meet the local needs of children and their families, are most likely to serve communities well and maximize positive, effective results from available resources (p. 5). This Ministerial-level acknowledgement highlights the importance of health services research on the complex issues related to child and youth health. How to use such research to address a number of key factors remains unclear, but such research should: (a) involve multiple stakeholders in the health system to gain a broader perspective, (b) be participatory and collaborative, (c) integrate research and practice, (d) derive and integrate key concepts from multiple disciplines, (e) include both research and action components to effect change (particularly at the local level of relevance), and (f) address the issues across the local community level to the health system level. This study incorporates these components in striving to attain integrated health services for children and youth in North West BC. 8 D e l i m i t a t i o n s o f t h e S t u d y Delimitations are factors that are controlled by the researcher, as opposed to limitations which may affect a study, but are not under the researcher's control (Roberts, 2004). The main study period extended from Summer, 2003 to Spring, 2006. The study site was confined to nine Local Health Areas (LHAs) comprising the North West Health Service Delivery Area (HSDA), one of three HSDAs in the N H A . See Figure 1. A limitation (as opposed to delimitation) of the study, was that the Nisga'a Health Authority declined to participate. The reasons for this are outlined in Chapter Three. However, given the broader health system perspective that I believed essential to this study, several participants were identified and invited from other geographical areas, including: • N H A corporate offices in Prince George • BC Children's Hospital (an agency of the Provincial Health Services Authority [PHSA]) in Vancouver; • First Nations and Inuit Health Branch (FNIHB) of Health Canada in Vancouver • Ministry of Health Services in Victoria, and • BC Provincial Government Social Policy Integration Team in Victoria. I delimited study participants to four stakeholder groups: (a) general public/service recipients, (b) clinical service providers, (c) managerial decision-makers, and (d) policy decision-makers. 9 Figure 1. British Columbia Health Boundaries. From http://www.bcstats.gov.bc.ca/data/pop/maps/HA HSDA_C.gif Copyright © Province of British Columbia. All rights reserved. Reprinted with permission of the Province of British Columbia www.ipp.gov.bc.ca British Columbia Health Authorities and Health Service Delivery Areas Health Authorities • 1. Interior I 12. Fraser _J 3. Vancouver Coastal 14. Vancouver Island _J 5. Northern 6. Provincial Health Service (province-wide) Prepared by: BC Stats, June 2003 Nc*:Tlt rUgZ3He3iaCo«icllk3i lidep*io>iti»a!a amorlV M y P h i l o s o p h i c a l O r i e n t a t i o n , B e l i e f s , a n d B i a s e s In using a participatory research approach, it is important to recognize and declare my philosophical orientation, beliefs, and biases in the conduct of this study. These can be understood in three contexts: (a) my professional experience in health service delivery with recent emphasis on child health, (b) my academic preparation during this PhD program, and (c) my epistemological self-awareness. 10 My Professional Experience Professionally, I have held a number of senior management positions which, over two decades, has added immensely to my repertoire of skills in the area of health services planning at the local community, regional and provincial levels. During the 1980s, I completed a Master's degree in Health Services Planning and Administration, Department of Health Care and Epidemiology, University of British Columbia (UBC). During this period, I also coordinated the planning of a major hospital expansion project in Chilliwack, B C , a rural community situated in the Fraser Valley, approximately 110 kilometers east of Vancouver. It was during these graduate studies that I became interested in systems theory. I consciously tried to incorporate a systems thinking approach in my planning and administration roles. Given my simultaneous academic and work roles, I embraced the challenge of bridging research and practice on a day-to-day basis. Other progressively senior management roles followed, leading up to my recruitment in 1989 as Executive Director, Sunny Hil l Health Centre for Children, Vancouver, BC. In this role, I was responsible for overall leadership and management of Sunny Hi l l , a provincial, tertiary resource providing specialized services to children and youth with developmental disabilities. Sunny Hi l l provided a large clinical and education outreach program with traveling clinics throughout the province on a regular basis. I became progressively aware of the issues facing rural and remote families, especially those living with special needs, and the complexity of planning and providing services. I believed in and promoted a collaborative approach, one of the key values espoused at Sunny Hi l l . Province-wide health reform in the mid-1990s included a government-mandated merger of the BC Children's Hospital, BC Women's Hospital & Health Centre, and Sunny Hi l l Health Centre for Children. In this transitional period, from 1996 to 1997,1 was Acting Vice-President, Programs, Planning and Outreach at Children's & Women's Health Centre of BC (C&W). I was 11 also CEO, Sunny Hi l l Health Centre for Children, responsible for planning, site redevelopment, and provincial outreach, and I continued as CEO, Sunny Hi l l during the merger process. I was subsequently appointed Vice-President, Health Promotion, Community and Site Services at C&W, 1997 - 1998, responsible for health promotion/child injury prevention, pediatric partnerships, community outreach, BC Reproductive Care Program, telehealth, site planning & construction, plant operations, environmental services, service delivery planning, and special projects. Another reorganization lead to my becoming Vice-President, Planning and Network Development, 1998 - 2000.1 was responsible for service delivery planning, facilities planning and site redevelopment, network development (including child health network initiative, intra-regional and inter-regional provincial partner ships/outreach activities and alliance-building initiatives), health promotion and injury prevention, and telehealth. I was increasingly involved with child and youth health issues at the provincial level. Through my portfolio, I consistently tried to broaden awareness of the need for enhanced relationships between local communities and access to specialized tertiary/quaternary services uniquely available in the Lower Mainland. I was a senior executive member of the Strategic Planning Committee 1998 - 1999, and Chair of a sub-committee on organizational values and beliefs. Among other roles, this further inculcated my sensitivity to, and promotion of, genuine collaboration at the organizational and inter-organizational levels. Perhaps serendipitously as an early sign of my future research, I was invited in 1999 by the North West region to facilitate planning toward integrated neonatal and pediatric services. As discussed below in the section on Gaining Access to the Research Site, the relationships built and local experience gained in the North West were instrumental to my return to the North West, now as a graduate student in a research capacity. 12 Yet another C & W reorganization saw my entire portfolio, including my position, eliminated in 2000 which effectively de-centralized planning and related functions for reasons that are still unclear to me. With the support of the Head, Department of Pediatrics, UBC, I negotiated a three-year secondment to the Department of Pediatrics, in conjunction with the Centre for Community Child Health Research, BC Research Institute for Children's & Women's Health2. During this period, I was involved in health systems planning on a province-wide scale with a focus on child health service delivery. My progressively complex professional roles, spanning over twenty years, provided many successes. But, I also lived through and learned from a number of failures, an anticipated part of the territory of health services planning and administration. These real-world experiences shaped my thinking, pervaded my decision-making role, and reinforced my predilection for a participatory approach to planning. In my view, i f any substantive progress were to be made in health reform, it would be through engaging a participatory approach working directly with stakeholders in their communities. That I accumulated decades of experience prior to embarking upon my PhD studies is significant. I had a working knowledge of the BC health system, first-hand experience at the rural community and complex academic levels of health services, and strong leadership skills with an excellent reputation in the health services field. In short, I was confident that I thoroughly understood the issues, at least from the perspective of managerial and policy decision-makers. Without these valuable life experiences and lessons, I likely would not have embarked upon this particular study, nor would I have necessarily approached the study in the way I did. 2 In July, 2005, this was renamed The Child and Family Research Institute. 13 My Academic Preparation Turning now to an academic perspective, my program of studies has had a profound influence on my thinking and, in many ways, legitimized my previous professional practice. My PhD program in Experimental Medicine and my thesis committee allowed me a great deal of latitude in coursework. In addition to regular courses, I enrolled in a number of Directed Studies in order to explore subject matter aligned to my interests and to fill knowledge gaps in my thesis content area. My participatory bias was again reinforced. Concurrently, I was actively engaged in a number of pertinent related initiatives, which also helped to shape and reinforce my philosophical orientation, beliefs, and biases. As a student affiliate in the Western Regional Training Centre for Health Services Research (WRTC) 3 , UBC, I was part of a collaborative training milieu of applied health services research with an emphasis on the research needs of health policy-makers, involving decision-makers in the training program, and addressing the research - decision-making interface. I was a trainee in the Centre for Community Child Health Research (CCCHR) 4 in the CFRI, a partnership between Children's & Women's Health Centre of BC and UBC. This enabled me to participate in a number of training opportunities directly related to my research, and created a collaborative, multi-disciplinary training and research environment. I was also a student affiliate in the Human Early Learning Partnership (HELP) 5 , UBC. This interdisciplinary research area focuses on early child development, and provided me with an opportunity to be exposed to a wide variety of related research. In 2004,1 embarked 3 WRTC is one of five training centres in Canada funded by the Canadian Health Services Research Foundation (CHSRF) as part of the Capacity for Applied and Developmental Research and Evaluation in Health Services and Nursing (CADRE) program.. It is co-sponsored by the Alberta Heritage Foundation for Medical Research (AHFMR) and the Canadian Institutes of Health Research (CIHR). For further information on this collaborative training initiative see http://www.wrtc-hsr.ca 4 C C C H R has four main areas, including population and community-based research in which I am situated.. A major focus is on translating research findings to practice. For further information on the CFRI and C C C H R see http://www.cfri.ca 5 HELP is a network of faculty, researchers, and graduate students from the four major universities in B C , and works in partnership with the B C Ministry of Children and Family Development, and is partially funded by them. For further information on H E L P see http://www.earlylearning.ubc.ca 14 upon a Fellowship Program in the Canadian College of Health Service Executives (CCHSE) concurrent with my PhD program. This builds upon my certification as a health services executive since 1994. I have enjoyed a unique combination of lengthy professional experience and academic education and training in a number of environments. From professional and academic perspectives, this has expanded and deepened my self-awareness of how I approach reality and scientific inquiry and my claims about knowledge. My Epistemological Self-Awareness Finally, I would like to share some personal reflections on what matters to me in epistemological terms, and how I conceive of change in real-world settings. I subscribe to the notion that knowledge emerges mainly by interacting and experimenting with the world, not just by passively observing it (Osberg & Biesta, 2003). Bohm (1996, p. 89) suggests "ultimately the nature of the world is that it is all mutual participation." This is a critical departure from positivist epistemology in which the observer and the observed exist independently in a purported objective, value-free environment. The scientific method distinguishes between the observer and the observed, and accounts for and controls confounding variables that could impinge upon objectivity. On the other hand, "temporal epistemology"6, as suggested by Osberg & Biesta (2003, p. 3), is not concerned with knowing and understanding the world as it is. Rather, it intervenes in the dynamic, ever-changing world to create new and more complex conditions with which to interact in yet more complex ways. Thus, temporal epistemology is about active intervention, an elicitation of emergent knowledge by metaphorically "twisting the 6 Osberg & Biesta (2003, p. 2) distinguish this from "representational epistemology", that is, to "...know things about the world by making representations of it..." 15 lion's ta i l " 1 . These insights are of particular importance in the context of multi-dimensional relationship(s) to reality (or realities), and how realities are represented. Chambers (1997, p. 32) advances a similar notion through "self-critical epistemological awareness." In the context of developing countries, he portrays reality as local, complex, diverse, dynamic, and unpredictable (Icddu). He critically observes a number of attributes: (a) that professionals, including administrators and social scientists, have vested interests; (b) that they are situated far from local realities; (c) that they exhibit a professionalism replete with erroneous beliefs; (d) that distance (physical, organizational, social, and cognitive) blocks, blurs, and distorts Icddu realities; and (e) that power, especially in terms of authority, control, and position, deceives and hinders these professionals. They are not self-aware. Chambers' insights, while reflecting experience in developing countries, is apropos in terms of how planning is typically conducted for health services. This reinforced my feelings about my own experiences, helped me to reflect on my former practices, and influenced how I approached this research. While I embraced a participatory approach in my professional roles, I became even more committed to using a participatory approach in order to mitigate the kinds of problems and bridge the gaps that I had experienced if not, in some cases, inadvertently created. My Conceptualization of Change Additionally, I would like to share some personal beliefs—perhaps these too are biases— in my conceptualization of change. This acknowledgement is important because change (action) is so integral to participatory research. Change is a common, yet commonly confused, anxiety-producing, and misunderstood concept that we encounter in our personal lives, work environment, and social settings. Commonly, people fear change as i f change was a negative, externally imposed event disturbing their personal comfort zone. But change, to be welcomed 7 This refers to gaining knowledge by actively intervening, not passively observing (Bacon, 1561 - 1626), as quoted in Hacking, 1983, as cited in Osberg & Biesta (2003). 16 and positively embraced, must first be conceptualized and contextualized in order to be understood. In the arduous process of health services, systems, and policy reform, the challenge of change persists. My first belief, borrowing from an ecological or natural systems worldview, is that change is a process, not an event. In support of this, a considerable body of literature is developing around the application of complexity theory and complex, adaptive systems theory to health services and policy (Glouberman, 2001; Miller, Crabtree, McDaniel, & Stange, 1998; Plsek & Greenhalgh, 2001; Veazie et al., 2001; Zimmerman, Lindberg & Plsek, 1998). Second, I believe that we need to reflect upon how we think about change or, to question the method of questioning. In this vein, Capra (1996, p. 40) suggests that systems thinking "...involves a shift from objective to 'epistemic science', to a framework in which epistemology—the 'method of questioning'—becomes an integral part of scientific theories." Third, I believe that if people at the local (community) level are genuinely engaged in the conceptualization and framing of problems or issues that are relevant and important to them, their acceptance of, and active participation in, the change process is not only possible, but positively embraced. Finally, I believe that the conceptual underpinnings that increase the likelihood of success of collaborative planning at the local level include the basic tenets of participatory research. This includes: (a) addressing the conceptualization and framing of the relevant issues, (b) active and meaningful participation by key community stakeholders, (c) appropriate environments for dialogue and reflection, (d) transformative learning by both the researched and the researcher, and (e) a genuine commitment to action (change). 17 T h e J o u r n e y a n d a R o a d M a p f o r t h e D i s s e r t a t i o n The Journey Raising the need for a road map implies that a journey is taking place. A journey is about going from one place to another place, as suggested in the definition of journey at the beginning of this chapter. The concept of place is critically important to this journey— to me as a learner and researcher, to the study participants who are grounded in their local realities, and to you the reader, respecting your journey, perhaps to unfamiliar places. Place holds special significance and meaning and will be more fully developed in context in Chapter Two and further in Chapter Five in the context of boundaries. Paradoxically, this narrated journey belies the real journey in the same way that "the map is not the territory" (source unknown), the very point that I emphasize later in this study. A journey means visiting unfamiliar places, or viewing familiar places through a new lens, and is about discovering new people, new things, and new ways. This is a journey that takes place in four distinct but interrelated domains: (a) intellectual, (b) technical, (c) geographical, and (d) liminal. Intellectual o In the intellectual domain, I journey into the world of transdisciplinarity in which sense needs to be made of the broad range of disciplines associated with health services research and delivery. I explore five areas to elucidate the useful role that such disciplines have, but have not been incorporated to any significant extent: (a) complex, adaptive systems; (b) community-based participatory research; (c) health care geography; (d) knowledge translation, and (e) boundaries/boundary objects. Initially, this may seem to be a strange concatenation of topics; 8 Rosenfield (1992) distinguishes the terms multidisciplinary, interdisciplinary, and transdisciplinary. Multidisciplinary refers to working on a common issue from a discipline-specific basis. Interdisciplinary research addresses a common issue from a joint, but discipline-specific basis. Transdisciplinary research draws from specific disciplinary theories and concepts, but uses a shared conceptual framework to address a common issue. The shared contextual framework used in this study is participatory research. 18 however, as the journey progresses, the concepts generated in these areas will become more visible, relevant, and shared. Technical In this domain, I explore a number of technical aspects concerning the strategy for, and design of, the journey. These include such things as gaining access to the territory, understanding the local nuances, designing the proposed journey, and gathering and making sense of the pertinent data and information. This also includes ensuring that the journey is authentic and reflects as closely as possible the reality under study. Additional tools, such as administrative data and mapping software are used to create maps to help everyone participating in the journey to become aware of and understand issues pertinent to their local context. Geographical ' The geographical journey has a number of related components—physical, human, demographic, and cartographic. In terms of the physical and demographic aspects, I make a concentrated effort in the course of this journey to travel by car, ferry, and airplane to communities in a variety of weather and travel conditions. Otherwise, it is difficult to capture the expanse of the North and the North West and the population distribution. A glimpse of the territory is offered in Chapter Four but, as many study participants explain, one cannot possibly appreciate the geographical distances, weather, transportation, access, and related challenges unless they are physically experienced. The geographical journey also highlights a number of geographical inter-relationships, such as: (a) urban - rural, (b) centre - periphery, (c) South -North, (d) provincial - local, and (e) system - community. The cartographic (mapping) component is captured in my use and application of geographic information systems (GIS) as a tool to map selected child and youth health services 19 utilization data from a BCMOHS administrative database. This served as a useful visual aid for dialogue when I gathered data during a participatory planning (search) conference. Liminal Finally, the liminal domain, which is the most abstract, is also the most intriguing aspect of this journey. Liminality means "occupying a position on, or on both sides of, a boundary," (Concise Oxford Dictionary, 1995). Boundaries are borders. In a journey, borders are crossed at multiple levels. For example, these can be physical, cultural, ethnic, gender, age, social, economic, and political. These boundaries can also be walls or gaps that separate (in order to keep entities or environments apart), or bridges that connect (in order to allow exchange between entities or environments). A living cell membrane is a useful metaphor to understand this concept. The membrane functions both as an anatomical structure to separate cell contents from its environment and as a physiological process to connect to its environment to allow the flow and exchange of materials critical to the functioning and sustainability of the cell. Similarly, such boundaries in social constructs can be what separates or connects disciplines, sectors, organizations, theory and practice, or research and action. These boundaries can be visible or invisible, tangible or intangible, concrete or fluid, structural or processual. This requires us to recognize and appreciate boundaries in ways we may not have imagined. Even more elusive are boundary objects that traverse such boundaries. Metaphorically, this concept is akin to the plethora of physiological exchanges occurring at and through the cell membrane. They share many of the same properties as boundaries. Boundaries and boundary objects can be classified and have paradoxical properties and characteristics. These classifications and properties will be more fully explored in Chapter Five in keeping with a basic tenet of grounded theory in which exploration of the literature is often deferred to a later point in the study. Thus, the literature on boundaries and boundary objects is deferred to a more appropriate later juncture in this thesis. 20 In foreign territory we may fail to appreciate the nuances of crossing the local boundaries (borders) given such characteristics as culture, customs, historical issues, political milieu, and perceptions of and attitudes toward outsiders. Often, it requires a great deal of preparation or access is simply denied or costly. This section has introduced several points of interest in this journey, and these will be more fully explored in Chapter Four. The following section outlines how the dissertation is 0 organized and will serve as a roadmap to guide this journey. A Road Map for the Dissertation This dissertation consists of six chapters and is organized as follows: • Chapter One introduces (a) the issues under study; (b) the research and why it is relevant; (c) my philosophical orientation, beliefs, and biases; (d) a metaphor of a journey to set the stage for reading the dissertation; and, (e) a road map to stay on the journey's intended path. • Chapter Two is largely an intellectual journey that reviews the pertinent academic and gray literature, including a number of government, organization, and agency reports, papers, and commissions relevant to the health system and services at the federal and provincial levels. The scholarly literature relevant to four themes is reviewed, including: (a) complex, adaptive systems; (b) participatory research; (c) health care geography; and, (d) knowledge translation. As noted above, literature on boundaries and boundary objects is deferred until Chapter Five and introduced in the context of the findings. • Chapter Three is a technical journey which discusses in detail the research methodology used in this study. It includes a dominant qualitative component and a nested quantitative component. Included in this chapter are: (a) ethics and research review committee 21 approvals for the conduct of the research; (b) gaining access to the research site; (c) mixed methods (priority qualitative and nested quantitative) design used in this study; (d) sampling process; (e) data gathering methods (semi-structured interviews; focus groups; search conference); (f) quantitative component; (g) data analysis (qualitative and quantitative); (h) grounded theory and constructivist grounded theory approach; (i) transcribing the data; (j) coding processes; memo writing; (k) validity and trustworthiness; (1) qualitative authenticity criteria; (m) quantitative component; and (n) special considerations and issues. • Chapter Four is both a geographical and liminal journey which takes place largely in the North West, and introduces and discusses the study's findings. Three major conceptual categories are developed from the initial analysis of early data, including: (a) perceptivity about the health system, (b) emotivity generated by the health system, and (c) inclusivity in the health system. A common thread is developed around numerous dyadic9 relationships. Using a constructivist grounded theory method, I develop two core conceptual categories which emerged from the data during analysis of the qualitative data. They are used to develop a theoretical framework for linking community-based participatory research (CBPR) and planning. • Chapter Five is mostly a liminal journey and brings us to the concepts of boundaries and boundary objects, which are developed in the context of a classification of knowledge boundaries and related boundary objects. An existing model is explored to introduce the concepts. I then develop a model in the context of public sector health services planning in the North West based on the concepts generated from the data. This chapter also 9 The term dyad, for the purposes of this dissertation, refers to a binary relationship in which there are two parts, regarded as one. This is conceptually different from a dualistic relationship in which there are two independent and separable realms (Angeles, 1981). 22 explores how to apply the findings to planning child and youth health services, bridging theory and practice settings. • Chapter Six explores several interface dynamics in different contexts and how they might be applied in practical terms. Based on the findings in this study, a theoretical model is introduced that melds research and planning practice. Insights and implications for each of the stakeholder groups engaged in this study (public, clinicians, managers, and policy-makers) are offered. A number of key recommendations for future research, building on the findings generated in the study, are suggested. Finally, in keeping with this journey metaphor, a number of forms, guides, and maps are provided similar to those available at Information Centres along the highway. A number of Appendices are included to which readers are referred should further detail be required on letters, forms, interview guides, and related materials which were used throughout the course of the study. Selected maps generated to demonstrate the utility of geographic information systems as a tool are included only as examples. S u m m a r y This introductory chapter has presented the gap between what the research evidence is saying and how health services planning is actually done, with specific reference to child and youth health services in North West BC. A brief outline of the issues was presented in the context of the reformed (and still reforming) provincial health system, setting the stage for the purpose, importance, and relevance of the current study. The need to move beyond rhetoric to action was emphasized. The preliminary and refined research question and sub-questions were posed. Study delimitations were summarized. As a researcher, I shared my philosophical orientations, beliefs, and biases. Finally, the research journey and dissertation road map were offered to guide the reader through the study. 23 Chapter Two will now take us on an intellectual journey. It explores areas needed to better understand the complexity of the issues and challenges involved in the planning and delivery of health services for children and youth in North West BC. 24 CHAPTER TWO: Review of the Literature I n t r o d u c t i o n There is a considerable amount of scholarly and grey literature in health services research and service delivery. These emanate from, for example, provincial and federal government branches, ministries, and departments; non-governmental organizations, associations, and institutes; funding agencies; and, health authorities. From a scholarly perspective, this study incorporates literature from a broad range of academic disciplines relevant to health services research and delivery. From the perspective of the grey literature, a myriad of sources are available, such as reports, discussion papers, position papers, conference proceedings, and commissions. There are significant challenges to effectively framing the breadth and depth of the core and related issues concerning health services research and service delivery, in particular those concerning children and youth. Balancing relevant content across the disparate and burgeoning sources (to achieve breadth across disciplines) with comprehensiveness (to achieve depth within disciplines) is particularly important. I elected to organize this intellectual journey into the literature as follows. There are two sets of literature. First, in this Chapter, I provide an overview of the health system at three levels—federal, provincial (emphasizing BC activities), and regional (incorporating literature relevant to the recently reformed health system in BC). The examples provided are intended to be illustrative of the complexity and number of initiatives underway, not a comprehensive listing. I then explore four fields of studies—(a) complex adaptive systems, to help make sense of the term system in the health system; (b) participatory research; (c) healthcare geography, including concepts of place and locality; and, (d) knowledge translation. Second, in Chapter Six, I explore literature specific to the concepts that emerged as this research progressed—boundaries and boundary objects. Discussion of this latter body of 25 literature is deliberately delayed in the context of grounded theory and the emergence of the core categories, boundaries and boundary objects. T h e C a n a d i a n H e a l t h S y s t e m Canada does not have a national health system, per se, although reference is often made to this misnomer. Rather, the Canadian health system is an assemblage of ten provincial and three territorial health systems. The Canadian health system functions less as an integrated system, and more as a patchwork of loosely connected parts. The federal/provincial/territorial relationships are very complex, dynamic and, historically, unstable. Responsibility for health was largely conferred upon the provinces through the Constitution Act (1867). Exceptions include services to certain groups of people, such as primary care to First Nations and Inuit peoples, Royal Canadian Mounted Police, Correctional Services, Armed Forces, and Veterans (Kirby, 2001). Other exceptions include: health protection; health promotion; disease prevention and education strategies; health research; and, financial support of provincial health care systems (Kirby, 2001). The Canadian health system is based on five overarching principles of the Canada Health Act (1984): public administration, comprehensiveness, universality, accessibility, and portability. Still, the system has been subject to a number of time-consuming, costly, and largely repetitive reform initiatives at the federal, provincial, and territorial levels. In the following sections, I provide examples at the national and provincial levels, starting in the last decade, to illustrate these unabating and, to a large extent, unresolved issues. Given the number and scope of these reports it is beyond the purview of this thesis to provide more than a summary review. It is anticipated that the source documents cited will be accessed should a more comprehensive analysis be sought. 26 Federal Initiatives In 1994, The Right Honourable Jean Chretien, Prime Minister of Canada, set in motion the National Forum on Health whose purpose was to advise the federal government on how to improve the health system and the health of Canadians (National Forum on Health, 1997). It focused on long-term, systemic issues and established action priorities in three areas: (a) preserving the health care system, (b) transforming knowledge into action, and (c) using better evidence for decision-making. In 2000, a national rural health strategy was announced by the Government of Canada in response to cross-country advice from rural citizens and providers collected at rural summits (Health Canada, 2001). This strategy prioritized the issues, proposed a collaborative approach, and illustrated that national leadership was required in rural health, including the creation of an Office of Rural Health to provide a "rural lens" to federal initiatives. Strategies for rural, remote, and northern health care were also being developed independently by rural communities rather than awaiting direction (Prince George, 2001). From this summit there were clear expectations that: (a) communities take responsibility for change, (b) communities take leadership for action, (c) communities develop partnerships, and (d) governments (federal and provincial) recognize that communities must be empowered to take action. Other nationally focused agencies, such as the Institute for Research on Public Policy (IRPP), drew attention to why Canadian Medicare was in need of reform and pointed to factors that eroded public faith in the health system (IRPP, n.d.). Of significance is the call for strengthening initiative and commitment at the local level as key to health system renewal. Purportedly, this is best met by the "principle of subsidiarity, i.e., the level of government that is both closest to the people and best able to deliver a given service should be responsible for that service" (IRPP, n.d., p. 13), adding: 27 To ensure the continued health of Medicare, we must renew our commitment to local initiative and autonomy. We must reallocate to local or regional bodies the responsibility and corresponding authority for managing and operating the healthcare services needed by the people in their communities, (p. 14) Interestingly, this same principle of subsidiarity is being touted by BC as part of its government's plan to turn over authority to the lowest appropriate level of governance (Cernetig, 2006). This research study attempts to engage the essence of this principle in health services planning, in part, by using a multiple stakeholder approach and engaging people in their own communities and places of relevance. Rathwell & Persaud (2002) observe that health reform has taken different paths depending on the perspective taken. For example, federal reform has grappled with system-wide policy; whereas, provincial reform has taken on mainly structural issues. Regionalization is typically a large part of reform initiatives. The notion of regionalization does not enjoy a common definition even though this phenomenon has swept across Canada for decades (Lewis & Kouri, 2004). However, they describe the attributes of regionalization as: (a) regions are geographically defined, (b) regions exist and are given authority by virtue of the provincial government, (c) distributed programs are consolidated within a region, and (d) there is responsibility for a broad spectrum of health services within a region. They also point out that regionalization is rarely challenged as a strategy, is still embraced, and is proceeding in the absence of solid evidence that it is producing the desired effect. For regionalization in Canada, "[ejvaluative data are hard to come by" (Lewis & Kouri, 2004, p. 30). Even more telling is the paradox in which a number of Canadian provinces embraced regionalization at the same time that England, for example, was toning down such structures (Glouberman & Mintzberg, 2001). 28 On the recent national scene, two noteworthy commissions— the Kirby Commission and the Romanow Commission—overlapped to a significant extent in both content and timing, although their respective mandates were different. In 1999, the Standing Senate Committee on Social Affairs, Science and Technology was mandated to study the Canadian health system and examine the federal government's evolving role in health care. In 2001, the Commission, lead by Commissioner Kirby, began its task and produced a number of reports, including: (a) historical background, (b) major future trends, (c) comparisons to other developed countries, (d) federal roles in health and health care, (e) principles and recommendations for reform, (f) an action plan for restructuring that part of the system concerned with hospitals and physicians, and (g) several related thematic areas (Kirby, 2002, Kirby & LeBreton, 2001). In 2001, a federal Commission was established, led by Commissioner Romanow, with a mandate to "review medicare, engage Canadians in a national dialogue on its future, and make recommendations to enhance the system's quality and sustainability" (Romanow, 2002, p. xv). This report, unlike others, recognizes the difficulty with using the term "system" to describe a system in which there is unacceptable fragmentation of services and persistent disconnection in all jurisdictions throughout the health system. Forty-seven recommendations were made. Health system reform and renewal was urged in a number of key areas. One of the recommendations included the creation of a Health Council of Canada to help improve the historically dysfunctional relationships between the federal government and the provinces and territories, and to help monitor and report on health system performance. The First Ministers formed this Council in 2003 with a view to advance the Accord on Health Care Renewal, focusing on and accelerating health services improvements (Health Council of Canada, 2005). This Accord is viewed by the First Ministers as a "covenant", an action plan for renewal of the health system, and a commitment to partnerships between governments, providers, and the public. The extent to which the Accord meets the recommendations of numerous provincial and federal reports will be 29 the subject of on-going debate. Moreover, the First Ministers have agreed on a 10-year action plan to ensure that access issues are addressed as a national priority (Health Canada, 2004). Given the simultaneity of these and other federal and provincial reports, a number of observers have offered thematic summaries, comparisons, and contrasts. For example, Fooks & Lewis (2002) report on nine common themes, including: (a) population health, (b) financing, (c) primary care reform, (d) regionalizing service delivery, (e) pharmaceutical policy, (f) human resource planning, (g) quality improvement, (h) governance and accountability, and (i) home care services. For the most part, these themes are supported to various degrees. However, there are discrepancies between federal and provincial perspectives on their relative importance. Others, such as Davis (2002), believe that the federal and provincial reports reflect consensus on the fundamentals of reform, but lack agreement on service levels, cost, and financing. Yeates (2002) comments that these reports provide public reassurance that the fundamentals of the health system are correct; however, focused efforts toward modernization and sustainability are required. Another federal and provincial priority concerns primary health care reform. This is distinguished from primary care, which entails the "diagnosis, treatment and management of health problems with services delivered largely by physicians" (Fooks, 2004, p. 3). Primary health care reform "promotes an integrated multidisciplinary and client-focused approach to the delivery of health services to ensure that Canadians receive the most appropriate care, by the most appropriate providers, in the most appropriate settings" (Kouri & Winquist, 2004, p. 1). Opportunities, challenges, and implications of different primary health care models are described from a number of perspectives (BCMOHP, 2003; Canadian Health Services Research Foundation [CHSRF], 2003; Romanow, 2002; Fooks, 2004; Millar & Beardall, 2001). 30 Primary health care renewal is well underway across Canada, thanks to the Health Canada $800-million Primary Health Care Transition Fund established in 2000. Among its many objectives, this is intended to increase continuity of, and access to, care for populations with unique needs, particularly in rural and remote areas, and improve health services integration (Health Canada, 2005). Ringing familiarly is the yet-elusive goal of "[providing] the most appropriate care, from the most appropriate provider, when and where they need it" (p. 4). Just how the provinces will sustain this renewal when federal transition funding ends is uncertain at this point. Finally, on the national scene, the debate continues on the privatization of Medicare in Canada, recently made real with the Supreme Court of Canada decision (Chaoulli decision, 2005) to allow an individual in Quebec to use private insurance to buy a medically necessary service—hip replacement surgery (CHSRF, 2005a). This decision and its anticipated predominantly negative impacts on Medicare are being played out in many forums. The privatization versus Medicare debate is heating-up and will undoubtedly be at the centre of a firestorm of questions about how to decide on an appropriate balance of public-private services in individual provinces and territories without eroding the basic tenets of the Canada Health Act and public confidence. After this overview on the national scale, I now briefly outline the experiences in a number of provinces. For the sake of convenience, I will introduce these initiatives starting at the Eastern seaboard and moving West, and discuss selected provincial initiatives. Seemingly, this has occurred without the major fanfare of major commissions and widespread publication of reports. 31 Selected Provincial Initiatives New Brunswick undertook an extensive public consultation approach in the early 2000s with the goal to improve health and access to health services in that province. This resulted in a report, "Health Care: A New Brunswick Perspective", which included some 17 areas of focus and 122 recommendations. Quebec mandated a Commission to hold public consultations throughout the province on issues faced by its health and social service system and to propose future solutions. This resulted in the Clair Report in 2000, which focused mainly on organizational and financing issues and offered a number of recommendations and proposals. Ontario, effectively the only province electing to stay out of the regionalization movement until very recently, did spend a number of years on mandated province-wide hospital restructuring. In 1996, the Health Services Restructuring Commission was established by the Ontario Government with a four-year mandate to address three components: (a) province-wide hospital restructuring, (b) advice on required changes to the health system, and (c) recommendations for improving health system integration and coordination (Ontario Government, 2000). However, the focus of reform in Ontario has more recently moved away from hospitals. The creation of 14 Local Health Integration Networks (LHINs) represents that province's latest attempt at health system reform. These Networks were created "because local health services are best planned at the local level, by people familiar with the needs of a community.. .to help plan and coordinate the health care services that are right for people in different communities" (Ontario Government Ministry of Health and Long-Term Care, 2005). Saskatchewan appointed a Commission on Medicare (Fyke Commission) in 2000 which resulted in a report, "Caring for Medicare: Sustaining a Quality System." This included the 32 mandate to identify the challenges associated with reforming Medicare; to recommend an action plan for service delivery; and, to examine long-term stewardship. In Alberta, the Premier's Advisory Council on Health, developed a framework document in 2000, including a number of key themes and recommendations for reforming that province's health care system—"A Framework for Reform." It recognized the complex and diverse nature of the health system, likening it to "an interwoven web where decisions or actions in one part of the system have a profound effect on others" (Alberta Government Premier's Council on Health, 2001, p. 4). British Columbia Initiatives In 2001, The Legislative Assembly of British Columbia commissioned the Select Standing Committee on Health "to examine, inquire into and make recommendations with respect to the changes that are necessary to improve the provision of health services in British Columbia, and to ensure that government expenditures on health care services are sustainable" (British Columbia Legislative Assembly, 2001, p. 2). This resulted in a report entitled "Patients First: Renewal and Reform of British Columbia's Health Care System". Four overarching principles were identified: (a) equity, (b) patient-centred care, (c) evidence-based care, and (d) accountability. While patients were appropriately recognized to be at the centre with the need for service coordination around them, the system was recognized for what it was—highly fragmented, lacking communication and coordination, with competitive service providers, and lacking incentives for collaboration. The need for a "made-in-B.C. approach" (British Columbia Legislative Assembly, 2001, p. 11) was highlighted in order to address the province's geographic and demographic nuances and regional disparities which are accentuated in rural and remote areas. These issues will be more fully addressed in a later section. 33 Of the several reform initiatives that swept the nation during this time, it is noteworthy that the BC report is not readily acknowledged in the literature in terms of health care delivery reform. Conversely, those from Alberta, Saskatchewan, Quebec, and New Brunswick are deemed "key" reports (Canadian College of Health Service Executives, 2002, p. 3). Similarly, Fooks & Lewis (2002), in their review of health reform in Canada, reflect on a number of key provincial reports, including Ontario. Again, the British Columbia effort is conspicuously absent. The reason for this is not evident in either account. Following this overview of reform activities across the nation, I turn now to a closer look at the BC health system. First, I provide an overview of reform and regionalization at the provincial level, with specific attention to the Northern Health Authority (NHA). Then, I focus on rural and remote health services, drawing upon recently developed provincial access standards and guidelines as a means to illustrate the inter-connectedness and complexity of issues associated with access to services, for example, in the North West region. T h e B r i t i s h C o l u m b i a H e a l t h S y s t e m In 1999, the BC Ministry of Health and Ministry Responsible for Seniors created a Strategic Directions document building on health goals developed by the provincial health officer. This was intended to complement the health authorities' Health Service Plans and the Ministry's more detailed work plan. The document recognizes the need for a "strong planning approach" to accomplish anticipated change (BCMOH, 1999, p. 1). The need for broader community involvement is raised. Then, beginning in 2001, the British Columbia health system underwent another major restructuring by the then newly elected Liberal government. Ostensibly, this was to correct the complicated, confusing, and expensive array of the extant 52 health boards, councils, and health services societies (BCMOHP, 2001a). This earlier complex structure had been created under the 34 political party of the day, the New Democratic Party, in order to move decision-making and responsibility "closer to home" (BC Royal Commission on Health Care and Costs, 1991). This initiative was subsequently criticized for a variety of reasons, for example, issues of timely access, long waitlists, and fragmented services (BCMOHP, 2001a). The again-reformed (and still current) structure includes a number of components. The Provincial Health Services Authority (PHSA), a first in Canada, is responsible for planning, coordinating, and providing specialized services and provincial programs, and ensuring equitable access to health services. Five geographic Health Authorities (HAs) are responsible, on a regional basis, for governing, identifying regional needs, planning health services, and funding and management. Fifteen Health Service Delivery Areas (HSDAs) are responsible for managing health service delivery and ensuring that communities have protected local input into health service delivery (BCMOHP, 2001a). At that time, two Health Ministries were created: a Ministry of Health Services to oversee the day-to-day operations; and a Ministry of Health Planning, another first in Canada, to concentrate on policy-related issues and future needs. Additionally, two Ministers of State, yet another first in Canada, were responsible for mental health and home and community care (BCMOHP, 2002a). Other notable features of the reformed provincial health system include performance contracts for health authorities, a rolling three-year funding model, population-based funding, consolidation of acute care services, and access standards and acute care guidelines (BCMOHP, 2002a). However, the BCMOHP was abruptly disbanded shortly thereafter with limited public explanation. In 2004, The Federal First Ministers agreed to a "Ten Year Plan to Strengthen Health Care", the top priority of which is to improve access and reduce wait times (BCMOHS, 2005a, p. 12). Thanks to this agreement, BC expects to receive $5.4 billion in new federal funding over the next 10 years, which will be used to address a number of priority areas. This specifically includes addressing access and service issues for youth addiction and the early screening of 35 children. Consequently, the BCMOHS, in its 2005/06 - 2007/08 Service Plan, includes a number of goals, objectives, strategies, and performance measures to guide its mission. It is illuminating to briefly review how this is envisioned to unfold in order to demonstrate the complexity associated with even one or two objectives from the perspective of government. Take, for example, the goal of "high quality patient care" (p. 21). One objective is concerned with "[tjimely access to appropriate health services by the appropriate provider in the appropriate setting" (p. 21). It is interesting to read that: The ministry and its partners have been working diligently over the past three years to ensure hospitals, community services and health professionals are used in the most efficient and effective way possible so that people get the right type of care in the right type of setting that will lead to the best possible outcome, (p. 21) Moreover, the latest Annual Service Plan Report (2004/05) of the BCMOHS, in reference to the past four years of fundamental reforms and structural changes, boasts "improved access to care, integration of services and providers, and outcomes for patients" (BCMOHS, 2005b, p. 5). Another objective is the "[ijmproved integration of health care providers, processes and systems to allow patients to move seamlessly through the system." This objective, however, focuses only on mental health and addiction services. Strategies include, for example, "[providing a full continuum of mental health and addiction services within each health authority, which better integrates primary, secondary, community and tertiary care and is integrated within the large care networks" (BCMOHS, 2005b, p. 26). This strategy is silent on children, but specifically addresses youth addictions. While confusing, the reason for this is entangled in the mandate of the B C M C F D . The B C M C F D (2005b), like the BCMOHS, is self-laudatory about its accomplishments, claiming, for example: Over the past four years, we have been working toward making programs and services more responsive to the people that we serve, by redesigning our service delivery system to be more community-based. The ministry made progress in 2004/05, bringing services closer to communities and families while protecting health and safety, (p. 5) Although the BCMOHS and the B C M C F D make such unsubstantiated claims, they do not correspond with the perspectives of multiple stakeholders participating in my study, which was conducted within this same general timeframe. Indeed, the recent BC Children and Youth Review (Hughes, 2006) is highly critical of, and specifically targets, the current Liberal government's significant budget cuts for creating untenable instability and confusion in the B C M C F D . Examples of this sort of disjuncture are provided in Chapter Five. Moreover, the B C M C F D (2005a, p. 3), in its 2005/06 - 2007/08 Service Plan, advised that it "is shifting from centralized, provincial delivery of services to a community-based model that supports a sustainable, more integrated system to best meet the needs of vulnerable people....Strong partnerships and collaborative relationships with stakeholders and community partners are also critical to [their] success." Their mandate includes a number of areas related to the safety and wellbeing of Aboriginal and non-Aboriginal children, youth, and families, in particular, those who are vulnerable. Additionally, the provincial Child and Youth Mental Health Plan for British Columbia (BCMCFD, 2004) is part of its provincial services mandate. More recently, a new independent Crown corporation has been created to deliver services to people with developmental disabilities (BCMCFD, 2005c). This includes joint responsibility for services to children and youth with special needs (Community Living BC, 2005). Finally, the BCMOHS has just recently taken on the role of being a "steward of the system and less on being a direct service provider." (BCMOHS, 2005a, p. 7). In this capacity, it 37 provides leadership and support to, and a corporate management role for, health authorities and other partners in the provincial health system. Following this overview of reform and regionalization at the provincial level, I now turn to the regional level, specifically the Northern region of BC. The next section provides a summary of this large and predominantly rural and remote region. The Northern Health Authority Since 2001, the Northern Health Authority (NHA) has been responsible for the delivery of health services in northern BC (NHA, 2006). The NHA' s 2004/05 operating budget is approximately $448 million per annum, and it employs some 6,000 staff (in approximately 4,000 full-time equivalent positions). The NHA' s geographic responsibility covers approximately two-thirds of the province. This very large region is home to approximately 307,000 people (2005), representing 7% of the provincial population (BC Ministry of Labour and Citizens' Services, 2006). Twenty-nine percent of the population is less than 20 years of age, compared to a BC average of 23%. The number of children and youth is expected to decrease in all health authorities over the next five years. Thirteen percent of the population is Aboriginal, the highest proportion in the province. The N H A is governed by a 10-member board comprised of individuals appointed from throughout the North. It employs a single Chief Executive Officer under whom is a management structure that includes a Chief Operating Officer in each of three HSDAs (North West, North Interior, North East). A regional Aboriginal health policy and planning program is implemented as part of the NHA' s commitment to improving Aboriginal health (NHA, 2002). Throughout the province, the HSDAs are responsible "to ensure community participation in health care decision-making and protect local input into the delivery of health services." (BCMOHP, 2001a, p. 3). In keeping with this, each of the three HSDAs in the N H A has 38 explicitly stated that their responsibilities include "ensuring public and stakeholder input into health services planning and evaluation in the area." (NHA, 2002, n.p.). Performance-based management and accountability occurs as follows: The HSDAs are accountable to the HAs; the HAs are responsible for delivery of services within their geographical area; the PHSA works with the HAs to plan and coordinate care (and also operates and manages provincial health services); and, the MOHP and MOHS hold the HAs accountable for fulfilling their responsibilities (BCMOHP, 2001a). Finally, New Era reform includes three-year Service Plans, which address the provincial government's (and both the BCMOHP's and BCMOHS's) strategic context (planning, vision, mission, values, and strategic shifts), goals, strategies, objectives, performance measures, and targets (BCMOHS, 2002b). Large, remote, rural areas give rise to particular concerns about access to health care. In the next section, I introduce rural and remote health services, raising, for illustrative purposes, specific issues around, and challenges related to, formulating standards for access to health services in BC. Rural and Remote Health Services The BC Royal Commission on Health Care and Costs (1991) outlined a number of issues related to rural and remote health. Over 10 years ago, the then BC Ministry of Health and Ministry Responsible for Seniors, observed that "[ajccess to health care in rural areas is a major issue" (BC Ministry of Health and Ministry Responsible for Seniors, 1995a, p. 3), and that "[t]he health system in British Columbia is in a state of dramatic flux (BC Ministry of Health and Ministry Responsible for Seniors, 1995, p. 5). This was in partial reponse to the advice of the BC Royal Commission on Health Care and Costs (1991). Issues around access to timely and appropriate services have persisted. These issues are very complex, but BC was the first province in Canada to set minimum standards for patient travel times to services: Standards of Accessibility and Guidelines for Provision of Sustainable Acute Care Services by Health Authorities (BCMOHS, 2002c). It is illustrative to examine these in greater detail. Henceforth, I shall refer to them as the Standards. The Standards are comprised of two major components: access standards and, based on these, acute care guidelines. This is not intended to be a comprehensive analysis. Only the salient points are discussed here in order to outline some of the practical challenges around access to health services in the context of rurality and remoteness. Many of these same points were also raised during my interviews with participants during the course of my research. The Purpose of the BCMOHS Standards emphasizes the need to rationalize acute care services toward ensuring sustainability and quality of care. This emphasis on rationalization seems at odds with other Ministry documents which implicitly downplay rationalization in favour of long-term health goals, overarching principles, vision, mission, values, and strategic shifts (BC Legislative Assembly, 2001; BCMOHP, 2002a; BCMOHS, 2002a). This is because the Ministry's general approach has been one of regionalization, which "implies an allocation of health services based on geography" (Meade & Earickson, 2000, p. 368). In rural settings (which is most of the province), service coordination includes local access by getting "services to residents" including, outreach, telecare/self-care and telehealth services, and getting "residents to services" (BC Provincial Coordinating Committee for Remote and Rural Health Services, 1999, pp. 16,19). This distinction impacts concepts of access. Virtual technologies and virtual regions are made possible by new communications and information technologies, and these are changing the concept of the geography of service provision (Cutchin, 2002). Approaches to addressing rural and remote issues should be unique, not just an extension of urban concepts and priorities (Ramp, 1999; Watanabe & Casebeer, 2000). Yet, urban approaches are still being applied inappropriately to rural communities (Romanow, 2002). 40 Good quality acute care services are based, in the Standards, on three principles— accessibility, safety and effectiveness, and sustainability and appropriateness. They are footnoted as stemming from the dimensions of quality described by the Canadian Council on Health Services Accreditation (CCHSA) framework—Achieving Improved Measurement (AIM). However, the latter clearly identifies the dimensions of quality to be: responsiveness; system competency; client/community focus; and, worklife (CCHSA, 2003). The linkages are not readily evident in the document. Of the three principles, accessibility is a focus of concern. The Standards state that accessibility is "one of the five key principles of the Canada Health Act". This is correct. However, the interpretation in the standards document is not. Accessibility was added as a principle of the Canada Health Act in the 1980s to ban user fees and extra-billing. It concerns financial barriers to access (Romanow, 2002). To claim it as a principle related to the Standards under discussion, particularly issues around distance, is out of context. On the other hand, it is inappropriate to to limit the concept of accessibility to that of distance. A principle noted earlier is evidence-based care. "Evidence-based standards have been shown to promote consistency in access [emphasis added] and clinical outcomes." (BC Legislative Assembly, 2001, p. 15). Yet, the evidence-base from which these Standards are largely derived is apparently limited to a single literature source and a single country's experience. Accessibility in health services is described in many ways in the literature, including concepts of quality, variety of services, referral mechanisms, waiting lists, and physical access (Martin, Wrigley, Barnett, & Roderick, 2002). Access incorporates a number of important dimensions, which are discussed more fully in the section of Access and Utilization later in this chapter. Accessibility also includes barriers such as gender, culture, ethnicity, and sexual orientation (Cromley & McLafferty, 2002). Age should also be acknowledged. Meade & Earickson (2000) identify a number of additional variables associated with access: availability of services, means of access, provider attitudes, and the failure of the il l to adequately cope with 41 their own sicknesses. Finally, access can be differentiated in terms of geography (a function of time and physical distance) and socio-organizational access that help or hinder efforts to seek care (Ricketts, Savitz, Gesler, & Osborne, 1994). In contrast to these multiple perspectives on access, the standards in the document capture only two dimensions—time and distance. These are important, but limited in scope and intent. The Determining Factors stated in the Standards are factors that impact the quality of acute care health services. Two are illustrative—Population / Demographics and Distance / Geography. The Commission on the Future of Health Care in Canada (Romanow, 2002) reinforces the difficulties that are associated with concepts of access in rural settings. This raises an important reality—the dominant provincial rural geography, and the very uneven population distribution. In the context of rurality and rural patient needs, it is inappropriate to develop standards for access without first considering the evidence (which is multidimensional in this case) concerning potential impact on the places most affected by the standards, or without applying more sophisticated and rigorous geographic analyses that are now widely available. Just what kind of evidence is important to access and take into account is a topic that will be discussed later in this chapter in the section on knowledge translation. Distance / Geography perhaps represent the most important factor since it forms the basis of the Standards. The Provincial Standards of Accessibility section sets out the minimal requirements of accessibility for acute care health services, based on straight-line, aerial (crowfly) distance. Simple and convenient, this method lacks the sophistication required for BC's challenging geography and population distribution. Martin, Wrigley, Barnett, & Roderick (2002, p. 12) conclude in their study of access measurement in rural health care in England that "relationships observed for...crowfly distance do not hold when the more complex measures are used." A more sophisticated and accurate technology is geographic information systems (GIS), which also lends itself to complex modeling (Cromley & McLafferty, 2002; Higgs & White, 1997). Distance, in addition to geographical and time considerations, includes other equally important concepts such as mobility, cognitive distance, economic distance, organizational distance, and social distance (Chambers, 1997; Gatrell, 2002; Meade & Earickson, 2000). Remarkably, the Standards merely suggest that "[t]he geography of the province.. .must also be considered." To the contrary, it must be given a higher level of attention. In summary, the process for developing the Standards could have used a participatory approach with local expertise and could have been informed by different sources of evidence on a scale much broader than the apparent two sources. It could have acknowledged the findings and lessons learned in other jurisdictions. As they stand, the Standards invite critique in both process and content particularly from the perspective of those living in rural and remote communities who face health services access problems on a daily basis. In the context of my research in the North West, I experienced some of the issues firsthand and gathered data from local participants that belie the practicality of implementation of, and full compliance with, the Standards, in rural and, especially, remote settings. Some of these data are shared in Chapter Four and will serve to illustrate many practical challenges facing citizens in the North West, with or without the Standards. Similar laments are familiar in numerous discussion papers and reports at the federal and provincial levels. Yet, little action is evident at the local, rural level of the health system. The only recommendations specific to child and youth programs suggest the need for greater advocacy and greater prominence of community Child and Youth Committees in leadership and information sharing. This suggestion was within the reformed health system of the mid-1990s, which was again restructured. It is interesting, however, to note the recommendation within the context of substance abuse. Reference is made to a "system of care" model, which recognizes 43 holism, and the need for case-managed, client-centred coordination, and cooperation between ministries, agencies, providers, and community organizations (BC Ministry of Health and Ministry Responsible for Seniors, 1995a, p. 73). The recommendation calls for testing such a model, for example, in the program area of children and youth. Health services for children and youth are not specifically recognized. The root of the problem was recognized and articulated during the last decade (Provincial, Coordinating Committee for Remote and Rural Health, 1999): Many of the problems associated with the provision of health services are local in nature. Those involved in their solutions need to have extensive local knowledge and influence. This does not trivialize the contribution that is required from national and provincial organizations, but it suggests that the leadership required, and the responsibility for solution of problems, should reside locally with the Health Authorities (p. 10). The 2002 update on the 1999 recommendations for enhancing health services in rural BC outlines progress; however, there are still no specific points around services for children and youth (BCMOHP, 2002c). On the other hand, there have been a number of efforts at the national and provincial levels with respect to planning and policy-making. Examples are introduced in the next section, starting with initiatives at the national level. P l a n n i n g a n d P o l i c y E f f o r t s f o r C h i l d r e n a n d Y o u t h National Despite recent high-profile political attention at the national level, backed by research evidence on the importance of paying attention to growth and development of children, it is noteworthy that none of the federal or provincial reports thematically focused on children's issues. For example, the National Children's Agenda has recognized since its inception in 1997 that the needs of children span many sectors and levels of participation (Government of Canada, 1997). Similarly, the Canadian Institute of Child Health (CICH) has outlined a number of guiding principles for ensuring the health of children and youth, including the critical role of health sector interventions (CICH, 2000). The Canadian Association of Paediatric Health Centres (CAPHC) is a national organization providing important clinical, education, and research linkages between its members, and aiming to establish evidence-based guidelines for national health delivery for children and youth. Dozens of national organizations exist, too numerous to outline here10, who support children, youth, and their families. CAPHC is a national organization (not-for-profit) comprised of members who provide services for children, youth, and families in a broad variety of facilities and centres. Included in its goals is the facilitation of collaborative partnerships in order to help professionals transect traditional boundaries (CAPHC, 2003, 2005). In this context, a number of national organizations have recently formed the National Child and Youth Health Coalition, to develop a framework toward knowledge development, dissemination, and application, and to strengthen advocacy toward improved child and youth health care and health. This coalition is comprised of the following organizations: (a) CAPHC, (b) Canadian Child Health Clinician Scientist Program, (c) Canadian Pediatric Society, (d) Council of Canadian Child Health Research, and (e) Paediatric Chairs of Canada (CAPHC, 2004). Many provincial issues have national reach and significance, and many provincial initiatives around child and youth health services research and delivery should ideally be connected within and among provinces and territories. Since 2001, concerted efforts have been made by the Child and Youth Health Networks of Canada (CYHNC). This is a "network of networks" comprising child and youth health service delivery networks across the country, which have developed in different ways for different 1 0 For examples, refer to the C A P H C website: http://www.caphc.org 45 reasons. In some cases they arose because of government mandates; in other cases, they arose voluntarily to address issues around interdisciplinary and intersectoral integration. Some are largely urban-based; others span large urban and rural regions. Given the dearth of evaluative research in the planning, development, and effectiveness of such networks, the C Y H N C is embarking on a multi-site evaluation strategy in an attempt to answer such concerns (CYHNC, 2005). Ultimately, this strategy should lead to advances in planning, practice, and policy. This is a key organizational form and will be discussed further in Chapter Six in the context of implications for the future. Other population groups were identified in some reports; for example, Aboriginal peoples, rural populations, and women. Kent (2002), while lauding the similarity of Romanow and Kirby in policy proposals, specifically criticizes the lack of emphasis on children as a priority toward a strategy for population health. This, he observes, would work best through a framework of primary care managed at the local level, effectively shifting the emphasis to community health policy. This lack is particularly disturbing given, for example, the previously well-documented lack of recognition of emerging priorities for First Nations and Inuit children and youth, and the pressing need for a culturally-based action framework (Stout & Kipling, 1999). The 2003 Accord on Health Care Renewal does include the challenge of closing the health status gap between Aboriginals and non-Aboriginals through better service integration. However, it does not address the unique needs of children as outlined above. British Columbia Child health service utilization was being questioned decades ago, then in the context of BC's Children's Hospital and its anticipated role and capacity. Some eight years prior, it "was born into [an] environment of unplanned and uncoordinated pediatric services" (BC Ministry of Health//BC Children's Hospital, 1990, p. 7). Of interest is that a first strategy was to improve 46 utilization by "providing more services locally" (p. 4). Indeed, the second strategy involved "improving standards, coordination and planning" (p. 4). The third was "to get players to see themselves as part of a system" (p. 4). Equally envisaged then was the warning against inaction—"disjointed.. .wasteful.. .services.. .major gaps.. .shortage of tertiary care resources" (p. 5). Over 15 years later, these same recommendations and warnings remain largely unheeded. The BC Royal Commission on Health Care and Costs (1991) had broad terms of reference to examine the province's health system, again over 15 years ago. Following 18 months of province-wide consultation, a number of recommendations were made. Among them were a number of guidelines. Of these, it is noteworthy that one recommended putting the interest of the public first and recognized the importance of community involvement: "Decisions should be made as close to the community level as possible; local people must be allowed to shape the local system of health care delivery." (British Columbia Royal Commission on Health Care and Costs, Summary Report, 1991, p. 6). In the report, reference is made, apologetically, to only one chapter on the needs of children and youth. The mid-1990s also saw the tragic death of a child due to a widespread failure in the BC child protection system. This led to an inquiry by Justice Gove (BC Ministry of Social Services, 1995), which concluded "the child and youth serving system in BC needs fundamental change to build a new continuum of services and programs designed to ensure the safety and well-being of children and youth" (Morton, 1996, p. 1). Immediately following the Gove Inquiry, a Transition Commission for Child and Youth Services was established, led by Cynthia Morton, Transition Commissioner. She reported on recommendations for change in BC's systems serving children, youth and families. Among the recommendations was one to "transfer all child, youth and family services to a new ministry" (p. 2), including a mandate for "the integration of service delivery in communities, processes to include communities in planning and system re-design" (p. 2). A number of similar tragedies concerning children in care have occurred since then, leading to the most recent review by Hughes (2006) as noted earlier in this chapter. The BC Ministry of Health and Ministry Responsible for Seniors (1995b), in response to the BC Royal Commission on Health Care and Costs (1991), developed policy frameworks for designated populations, including children and youth, to guide the then Regional Health Boards and Community Health Councils. "The ultimate goal of such efforts is to facilitate equitable access to the health care system for all residents of British Columbia" (BC Ministry of Health and Ministry Responsible for Seniors, 1995b). A number of systemic issues specific to children and youth were identified, including: (a) service fragmentation, (b) changing service needs during transitional periods, (c) the need for the health system to partner with the educational system, and (d) the need for community investment in social planning and public policy. To address these and other issues, a number of goals and strategies were suggested. It is useful to reflect on at least a couple of the stated goals so eloquently stated 10 years ago: "Coordinate and integrate program planning and delivery across all systems providing services to children, youth and their families at provincial, regional and local levels"; and, "[pjrovide opportunities for children, youth, their families and their communities to participate in planning, delivering and evaluating the health care approach and their own health services." (Ministry of Health and Ministry Responsible for Seniors, 1995c, pp. 10, 12). Moreover, as part of the foregoing policy framework, An Action Paper was developed in order to assist in the translation of knowledge into the day-to-day work of people working with children and youth. An action research approach was suggested at that time, noting that "[fjhis kind of action research crosses mandates, Ministry responsibilities, public and private sectors, and local, regional, and provincial jurisdictions" (Ministry of Health and Ministry Responsible for Seniors, 1995d, p. 22). 48 During this same mid-1990s timeframe, planning for the decentralization of early childhood intervention to regional health boards proceeded in the context of a province-wide community consultation process, which included child development and rehabilitation. This report even reminds itself that its recommendations ring familiar: "In summary, like other reports before it, this report calls for an integrated, partnership model of service delivery with all stakeholders at the table.. .There is a clear call for change, and action" (BC Ministry of Health and Ministry Responsible for Seniors, 1996, p. 25). Unfortunately, what is clear is that 10 years has elapsed without substantial progress being made in integration and partnership between stakeholders, not only in early childhood in which some progress has been made, but also more generally in terms of health services for children, youth, and families. Similarly, the BC Provincial Health Officer's Annual Report (1997) which contained a feature report on British Columbia's children, addressed services for children in the context of "appropriate care", including four dimensions: "the right service, at the right time, by the right provider, in the right place" (BC Provincial Health Officer, 1998, p. 82). This report highlights the persistent, although narrowing, gap between the health of Aboriginal children and non-Aboriginal children. Of particular note is the observation that "individuals and communities are healthier when they are empowered and have a sense of control over their lives and their destinies" (BC Provincial Health Officer, 1998, p. 109). The provincial perspective in rural and remote health services delivery for children and youth is also important, necessarily complementing the local and regional perspectives. For example, BC Children's Hospital (BCCH), including Sunny Hi l l Health Centre for Children, is an agency of the PHSA, and is the sole tertiary health care provider for children and youth in BC. Their vision is "[bjetter health for children and youth, achieved with partners who work together to ensure access to the best care in the best setting" (BCCH, 2004, p. 9). This reinforces the need 49 to create and foster the many partnerships and linkages between the local, regional, and provincial components of the provincial health system that address child and youth services. The recently formed Child Health BC is a provincial health services delivery network that seeks to connect key partners in the area of child and youth health services, including provincial organizations, health authorities, a number of provincial Ministries, advocates, private sector/families, and other agencies and services. Child Health BC (2003) is both a forum and a framework for everyone involved in child health services to work together to create an integrated, accessible system of care that ensures that the right service is provided at the right time, in the right place, by the right provider, (p. 1) It builds upon principles developed earlier in the provincial pre-reform era by the then Child Health Network of the Lower Mainland and Fraser Valley of BC ( C H N L M F V ) 1 1 which was in existence from 1997-2000. Recommendations at that time foresaw the creation of a provincial children's health network, a provincial child health care strategy, and a province-wide information system to support these activities (CHNLMFV, 2000). In parallel to a service delivery network, and as a final example, the Child and Youth Health Research Network is one of eight networks established with funding from the M S F H R 1 2 . This network constitutes a research infrastructure for coordinating and leading child and youth health research toward evidence-based programs, practices, and policies in BC (MSFHR, 2005). Additionally, opportunities for inter-network, transdisciplinary collaboration are plentiful. For example, collaboration of Child and Youth Health services with Rural and Remote, and with Aboriginal health services, in order to better address the challenges of health services integration in predominantly rural and remote BC. 1 1 In my earlier capacity as Vice-President, Planning & Network Development at Children's & Women's Health Centre of B.C. (C&W), I functioned as Chair, Steering Committee & C & W representative (1998-2000). 1 2 The other research networks are: Aboriginal, Aging, Disabilities, Environmental & Occupational, Mental Health & Addictions, Rural & Remote, and Women's. 50 For the remaining leg of this journey, I draw mainly from the scholarly literature and explore four fields of study, or disciplines. These include: (a) complex adaptive systems (CAS), (b) participatory research (PR), (c) health care geography, and (d) knowledge translation (KT). I am deferring the introduction of boundaries and boundary objects to Chapter Five where these concepts are explored in the context of my research data and findings in the North West. C o m p l e x A d a p t i v e S y s t e m s ( C A S ) Introduction The health system is a complex adaptive system in terms of being a purposeful, organic, and changing network of socially-constructed relationships serving the common purpose of helping to improve the health status of the population. The extent to which these relationships work collectively, as opposed to working as parts separated by structural and functional barriers, determines how system-like the system behaves. Thus, it is important to conceptualize and understand a system, such as our health system, in ways that honour and respect system properties. Otherwise, serious attempts to change the system, its parts, its relationships, and its behaviour are, at best, naive and will add to the large number of health system changes that clearly have not resulted in a well-functioning system. Given that the health system is in large part composed of people, it follows that there are significant social and political aspects to the system. These characteristics do not conflict with those of CAS. As Flood (1999, p. 87) notes, "[hjuman systems are adaptive... involving] many people, each with their own interpretations and experiences of social rules and practices that affect them." CAS helps us to appreciate and understand such unpredictability and the dynamics created, including how people interact with each other and the tensions that arise in these social constructs. Similarly, Stacey (1992) suggests that political interaction plays an important self-organizing role as an expected characteristic of unpredictable complex systems. 51 Exploring CAS will offer multiple and differing perspectives on the health system and some insights into why our understanding of, and traditional approaches to, planning and policy-making in the health system within the public sector arena have not worked very well. Glouberman (2001), for example, examines the role of CAS in the health policy environment and why it is important to reframe our approach to thinking about health policy development. And, Haynes (2003, p. 28) observes that "[p]ublic services are classic examples of complex adaptive systems." Hence, my decision to employ this perspective. Defining the Terms in CAS A system is a set of inter-connected and inter-dependent parts that function together as a whole towards a common purpose (Capra, 1982; Flood, 1999; Kauffman, 1980; Plsek & Greenhalgh, 2001; Reason, 1980; Zimmerman, Lindberg, & Plesk, 1998). A system is an inseparable whole, knowable only as itself, and is irreducible (Wheatley & Kellner-Rogers, 1996). A system can also exist as part of another system (holon). A system can be extremely small (particle fields) or extremely large (solar); closed to the environment (diagnostic equipment) or open (ecosystem); relatively simple (hospital parking card reader) or highly complex (health services delivery). Complexity science, or complexity theory, is the study of complex systems. It is a relatively new science that focuses on parts, wholes, and relationships; how the parts give rise to the collective behaviours of the system; and, how the system interacts with its environment (Cilliers, 1998; Kauffman, 1980; Kirshbaum, 2001; Zimmerman, Lindberg, & Plsek, 1998). System complexity is measured by the amount of information and level of detail necessary to describe its behaviour (Bar-Yam, 1997). Complexity science is a transdisciplinary field of study that transects traditional scientific disciplines, focusing on parts, wholes, and their many relationships (Bar-Yam, 1997). Complexity science spans all scales from subatomic particles to 52 the universe, and it encompasses a broad array of disparate settings, such as: bio-molecular and cellular systems, engineering systems, social systems, and population systems (New England Complex Systems Institute, 2001). Complexity theory raises fundamental epistemological questions about "what we observe, how we observe, and what we know as a result of our observations." (Patton, 2002, p. 123). Characteristics of Complexity and CAS What is it about complex systems that makes them complex? These characteristics are well-described in the literature, for example, Bar-Yam (1997); Capra (1982, 1996); Cilliers (1998); Murthy (2000); Zimmerman, Lindberg, & Plsek (1998). Of these, the description by Cillers (1998) is particularly apropos to our exploration. He argues that philosophical perspectives can influence how we approach complex systems, and does this in the context of post-modernism13. These characteristics are summarized as followed: A complex system: a) is composed of many elements b) has elements that interact dynamically and change over time c) has elements that influence, and are influenced by, others d) has non-linear interactions e) has interactions that are short-range, but has long-range influences f) has positive (amplifying) and negative (reducing) feedback loops g) is usually interactive with the environment (open, as opposed to closed) 1 3 Cilliers does not attempt to provide a definition of post-modernism because it has accumulated so many meanings. However, he does refer to the position advanced by Lyotard who highlights multiple heterogeneous discourses based on local narratives as opposed to the unification of knowledge through grand narratives. These properties of localness and multiple discourses are important attributes in the context of the other fields of study explored in this and later chapters. 53 h) operates in a state that is far from equilibrium (which, in the extreme, is death) i) has a past which is partly accountable for present behaviour j) has elements that are largely unaware of the functioning of the rest of the system, responding only to locally available information. Mclntyre (1997, p. 1) poses a fundamental question about complexity: Is it "an artifact of the world or of our understanding [underlined in original] of the world?" Further, he contends that "complexity is an 'epistemological' matter.... [which] exists not merely as a feature of the world, but as a feature of our attempts to understand the world. Complexity, in short, is inextricably bound up with your point of view." (Mclntyre, p. 4). Complexity theory and CAS are closely related. Complexity theory is "systems thinking applied to the behavior of natural systems"; and more particularly, "[c]omplexity's theory of knowledge in living systems is specifically known as complex adaptive systems theory, or CAS theory" (McElroy, 2000, p. 201). During the last decade, Senge (1990) popularized systems thinking in the context of organizations and organizational learning. Capra (1996) also highlighted the need to shift our thinking from reductionist and analytic thinking to systems and contextual thinking. Systems explanation occurs in terms of relationships or, more accurately, webs of relationships with the system's environment. Reality, then, is constituted through a network of relationships. He suggests that there are no foundations in such a network; rather, different levels of systems exist with none being more fundamental than any of the others. In summary, as Waldrop (1992, p. 12) observes: "Complexity, adaptation, upheavals at the edge of chaos—these common themes are so striking that a growing number of scientists are convinced that there is more here than just a nice series of analogies." In the United States, health care is believed, comparatively speaking, to be the most complex industry, and is adaptive 54 in the sense that it adapts to constant change in health services (Kurtin, 2003). This characterization undoubtedly holds true for the health system in national and provincial settings in Canada and, thus, is relevant to many aspects of health services, for example as a conceptual lens for planning. This is discussed in the next section. Relevance of CAS to Health Services Planning Having outlined the main characteristics of CAS, I now turn to the relevance of CAS as a useful lens to re-conceptualize an approach to planning. There is growing realization at the global level, for example, in the World Health Organization, that a systems perspective is necessary in order to overcome fragmentation, competition, specialization, sectorality, and isolation (Pang, Sadana, Hanney, Bhutta, Hyder, & Simon, 2003). Taking a systems perspective does not necessarily invoke CAS; however, it is a useful way to make sense of the complex issues associated with the health system. Scholars in a number of other fields of study have already done this. Innes & Booher (1999a, 1999b) promote complexity theory to understand and develop collaboration in the context of social planning and consensus building. In the community development arena, Gilchrist (2000) suggests that new insights into the properties of social systems are provided by complexity theory. This is not a new quest, as exemplified by a 1984 symposium on "The Science and Praxis of Complexity". Included was a session led by Canadian Senator Michael Kirby who lamented that President Kennedy spoke 22 years earlier of the need for "sophisticated solutions to complex and obstinate problems." Senator Kirby reflected that "it is essential that a way be found to help the individual citizen understand the complex interactions of the problems the government is trying to solve.. .For when the basis of a decision cannot be understood by the public, a basic condition for the democratic process has not been met." He posited the question of what the science of complexity can do to help (Kirby, 1984). Seemingly, little progress has been made in the average person's appreciation for, and understanding of, 55 complexity whether they are, for example, public, clinical, managerial, or policy stakeholders. This may be a more fundamental issue than typically acknowledged because of how people typically frame problems for which they seek solutions. Thus, an interesting paradox arises. A great deal of effort is made to understand a system by the endless analysis of its parts (fragments) when a system can only be understood as its irreducible self. Bohm (1980) emphasizes the problem of fragmentary thinking and how this results in the more serious problem of people seeing—in fact, experiencing—the world as separately existing fragments. Fragmentary thinking leads to even more problems when people take actions that seemingly correspond to this way of thinking, and which, in turn, reinforce their fragmentary world-views. The same is true of how we treat information. Capra proposes a shift from reductionist to contextual thinking. Capra (1996, p. 272) suggests that "[w]e are so used to these abstractions [taking a piece of information out of its context] that we tend to believe that meaning resides in the piece of information rather than in the context from which it has been abstracted." Bohm's admonition is that if we take the content of our thought as the de facto description of the world it will lead us to seeing the world in this way; worse, experiencing it as fragments; and, even worse, seeing other people, or even the system, behave in accordance with this perspective. These reificatory processes then convert our abstractions, concepts, models and maps into our sui generis reality and world-view. This process is extremely difficult to countermand; thus, the relevance of CAS theory. In order to overcome this process and pervasive tendency to, develop fragmentary world-views, our thinking about, and approach to, planning needs to be reframed through a lens that respects the complex adaptive characteristics of the health system. The recognition of the value of collaborative approaches as a means to reframe the issues is starting to take hold. In 2001, a number of national groups collaborated for the first time to produce a report: "Listening for direction: A national consultation on health services and policy issues" (Gagnon 56 & Menard, 2001). The groups included: (a) Advisory Committee on Health Services of the Conference of Federal/Provincial/Territorial Deputy Ministers of Health; (b) Canadian Coordinating Office for Health Technology Assessment; (c) Canadian Health Services Research Foundation; (d) Canadian Institutes for Health Information; and, (e) Institute of Health Services and Policy Research—Canadian Institutes of Health Research. The significance and breadth of this collaborative effort speaks to the genuine desire to use a more coordinated response to address the priorities of policy makers and managers, focusing on key issues from the perspectives both of health services and of policy researchers. This resulted in the identification of 15 research themes of national priority. In 2003, this national consultation was again undertaken and, building on the earlier report, resulted in "Listening for Direction II." This process identified 10 priority research themes "designed to ensure that the research priorities that emerge are feasible from a research perspective and that they respond to the decision makers' needs" (Dault, Lomas, & Barer, 2004, p. 7). This takes us to the role of participatory (action) research and how this approach links with CAS. Over 25 years ago, Reason (1980, p. 35) outlined "new approaches to research" in the context of systems theory and holism, specifically, action research. This type of research is "fundamentally rooted in action" (Reason, 1980, p. 45). Key to this holistic research approach is "an iteration and dialogue between the necessarily partial views of internal and external perspectives (Reason, p. 46). Reason also suggests that this kind of research is guided by the notion of praxis, which, in this context, is characterized in terms of the dynamic interaction between reflection and action. Sohng (1995) describes praxis in terms of interaction between theory and practice. These elements of participation, action, research, and the interfaces between them, will now be discussed in the context of a participatory research approach. 57 P a r t i c i p a t o r y R e s e a r c h A p p r o a c h Participatory research (PR), including concepts of participatory action research (PAR) and action research (AR), is an approach to social research that combines the elements of participation, research, and action (Greenwood & Levin, 1998). This approach is distinguished by differences in degree in, for example, purposes, epistemologies, ideologies, and traditions (Herr & Anderson, 2005). Lewin (1946, p. 34) is generally credited with coining the term "action research" which he describes as "research which will help the practitioner." Two traditions are generally acknowledged: the Northern (Lewinian) tradition, arising in the late 1940s to mainly solve practical problems in organizational settings; and, the Southern (Freirian) tradition, arising in the early 1970s, to recognize an emancipatory, democratic and transformational perspective (Wallerstein & Duran, 2003). However, the scholarly literature points to a convergence and blurring of these largely semantic distinctions (Green, et al., 1995). Recent interchangeability of the terms action research and participatory action research demonstrates that their principles and values are merging (Wallerstein & Duran, 2003). Similarly, their basic commitments to balancing the elements of research, action, and participation effectively link these participatory research approaches (Greenwood & Levin, 1998). Stringer (1999) refers to community-based action research as using a collaborative approach to engage stakeholders to systematically resolve problems. Use of the generic term participatory research is being encouraged (Green, 2004; Green & Mercer, 2001; Green et al., 1995). This supports the observation that "[t]hose who first used participatory research and participatory action research [emphases in original] in print consider the two terms to be synonymous" (Green et al, 1995, p. 4). PR emphasizes a bottom-up approach (as opposed to a top-down approach), focusing on locally defined priorities and views, and is set apart from conventional research by the realignment of power to local participants, and the realignment of 58 the researcher's role from directing to facilitating during the research process (Cornwall & Jewkes, 1995). Others are beginning to identify an approach that values participation. Reason & Bradbury (2001, pp. 6, 7) observe that "[t]he emergent worldview has been described as systemic, holistic, relational, feminine, experiential, but its defining characteristic is that it is participatory: our world does not consist of separate things but of relationships." However, public participation in the context of local decision-making and policy development in the health sector may not be very compatible with the dominant expert model (Thurston, MacKean, Vollman, Casebeer, Weber, Maloff, et al., 2005). Community-based participatory research Another variation of PR is community-based participatory research (CBPR), one in a family of related participatory approaches to research (as distinguished from methodologies or methods) (Green, et al., 1995; Minkler & Wallerstein, 2003). CBPR and related approaches have gained widespread prominence and use in health (Israel, Schulz, Parker, Becker, Allen, & Guzman, 2003; Minkler & Wallerstein, 2003; O'Fallon, Tyson, & Dearry, 2000; Stewart, 2005; U.S. Department of Health & Social Services, 2003; Viswanathan, et al., 2004; Wallerstein & Durari, 2003; Waterman, Tillen, Dickson, & de Koning, 2001). This is especially apparent in public health (Israel, Schulz, Parker & Becker, 1998; Minkler & Wallerstein, 2003). Proponents of CBPR in public health recognize the sharing of core principles and values (Minkler & Wallerstein, 2003). These scholars typically situate this approach at the Freirian (emancipatory) end of the participatory action research continuum to convey attention to participation, knowledge, power, and praxis (Wallerstein & Duran, 2003). Even so, it is well-recognized that CBPR does not infer a single approach; rather, an approach should be developed uniquely appropriate to the community and situation under study (Israel, Schulz, Parker, & Becker, 1998; 59 Israel, et al., 2003). For applications in health, for example, when working with disadvantaged communities, compelling reasons for using a CBPR approach include the recognition of local community knowledge, the complexity of interactions, and the gap between research and practice (U.S. Department of Health & Social Services, 2003). Frustration persists with the challenges of applying research findings to community health issues, but CBPR is held out to be an important way to address this problem (Ahmed, Beck, Maurana, & Newton, 2004). A recent systematic review of the literature strongly supports health-related CBPR as a collaborative approach to bridge the gap between knowledge and community practice and its use as a way to rally action in the community (Viswanathan, et al., 2004). The notion of relating community and citizen participation in health is particularly important to understand. This comes with a number of challenges, but there are also ways to achieve success. The next section introduces the significance of community and the importance of enhancing the role of the public in CBPR processes. Otherwise, the idea of research being based in the concept of community is hollow. Thus, it is important to relate community and participation. R e l a t i n g C o m m u n i t y a n d P a r t i c i p a t i o n For the purposes of this study, I adopt the definition of community as "any group of individuals sharing a given interest...cultural, social, political, health and economic issues that may link together individuals who may or may not share a particular geographic association." (Green, et al., 1995, p. 3). The value of community participation, including the challenges associated with such involvement, has been extensively studied by Zakus & Lysack (1998). In a review article, they describe community participation (also called public, citizen or consumer involvement) in health as a strategy—a complex and fragile process for citizens to develop greater responsibility for their own involvement. However, they also identify several problems 60 associated with this approach, including: (a) the contextual variability and the need to disentangle other effects during implementation, (b) a lack of understanding of community participation and representational conflicts, and (c) a lack of critical analysis and conceptualization of community (Zakus & Lysack, 1998). Numerous challenges and dilemmas have also been described (Angeles & Gurstein, 2000; Botes & van Rensburg, 2000). Morgan (2001) in another review article describes both the "allure and challenge" of community participation, but also observes that: Today, facilitators and policymakers are more willing to assume the responsibility that is entailed by their desire to enhance participation. This means that they must take greater responsibility for planning the kind of participation [emphasis added] they want to encourage. Guidebooks often emphasize that project planners must begin by having detailed discussions about their own goals and definitions of participation before taking the concept to the field, (pp. 222-3) In this study, as a researcher and facilitator, I fully accept and sincerely attempt to model a responsibility for planning and encouraging the kind of multi-stakeholder participation upon which successful child and youth health services can be based. I make a conscious effort to ensure that I have reflected upon my own goals and conceptualization of participation well before embarking on fieldwork. This awareness, developed over many years through both professional experience and academic preparation, was described in Chapter One and is illustrated in ensuing chapters. Process has emerged as the sine qua non of participatory research. Community participation is not just input, but the basis upon which such research operates. Perlstadt, et al., (1998, n.p.), in a systematic review of the literature on citizen involvement in health planning, identify a number of important lessons. These reviewers suggest that successful citizen 61 involvement in health planning needs to: (a) have an external change agent, (b) address the power differential between people in control and the constituents, (c) collaborate on policy preparation, (d) share the change management process, and (e) institutionalize community. Thomas (1995) warns that government and societal institutions are lagging in their understanding of the importance of public involvement, and that public managers seem puzzled about how to go about it. For example, in keeping with BC's New Era intentions, this points to the need for enhanced citizen participation; however, the means to achieve this remain elusive in health planning. On the national scale, Church, Saunders, Wanke, & Pong (1995) conducted an extensive literature review of organizational models in community-based health care in Canada. They observed that one of the objectives of health reform initiatives was to enhance the role of consumers in decision-making. They concluded that, in spite of the growing trend to more actively involve consumers, citizen participation in Canada failed to progress beyond a consultative role (including royal commissions, public forums, and advisory committees). They suggested that the problem stems from power relationships between citizens, administrators, and providers, the root causes of which are unequal interests and disproportionate information. More recently, these observations are substantiated by a number of reports in the grey and scholarly literature. Maioni (2001), in the context of health reform and regionalization across Canada, suggests that decentralization and citizen engagement remain problematic because: (a) the system is very complex, posing interpretability challenges for non-experts; (b) public engagement could create conflict, leading to difficulties in achieving consensus; and, (c) there is a real potential for government to avoid accountability and blame. Rapidly growing interest in, and attention to, public consultation and involvement in Canada is apparent by virtue of the number of recent publications in both the grey and scholarly 62 literature, for example: Abelson, Eyles, McLeod, Collins, McMullan, & Forest (2003); Abelson & Forest (2004); Abelson & Gauvin (2004, 2006); Abelson, Forest, Eyles, Smith, Martin, & Gauvin (2003); Abelson, Forest, Eyles, Casebeer, Mackean, & the Effective Public Consultation Project Team (2004); Frankish, Kwan, Ratner, Higgins, & Larsen (2002); Gold & McMullan (2000); Martin, Abelson, & Singer (2002); Turnbull & Aucoin, 2006). In the U K , the National Health Service has vigorously pursued public involvement in health (Florin & Dixon, 2004; U K Department of Health, 2004a). This literature highlights the increasing recognition and importance of public participation, but calls attention to the paucity of research on how to best design and evaluate participatory processes. This is not only limited to public involvement, but extends, for example, to health care priority-setting involving other stakeholder groups such as administrators and clinicians (Martin, Abelson, & Singer, 2002). How to effectively engage the public in the context of regionalization and local involvement in planning and decision-making processes remains a puzzle, but work is rapidly proceeding on how to best conduct public consultation (Abelson & Forest, 2004). The practical challenges associated with citizen participation in the context of regional authorities is well-recognized, including the need for research on how citizen participation actually leads to better decision-making and an improved health system (Frankish, Kwan, Ratner, Higgins, & Larsen, 2002). The Canadian Policy Research Networks (CPRN) is making a concerted effort to address these issues in health care, including clarifying, enhancing, and assessing the impacts of public participation (Abelson & Gauvin, 2004, 2006), and promoting the development of a strategy to institutionalize public involvement (Turnbull & Aucoin, 2006). CBPR is particularly well-suited to address the complexity of child and youth health service research and service delivery planning. However, issues of power and control need to be 63 addressed. Identifying, understanding, and dealing with power relations and control is central to democratic participatory processes. These and related issues are discussed in the next section. P o w e r a n d C o n t r o l The need to recognize and address power relations and control issues in participatory approaches is well documented (Chambers, 1995, 1997, 1998a, 1998b; Cornwall & Jewkes, 1995; Greenwood & Levin, 1998; Martin, 1996; Nelson & Wright, 1995; Rocheleau & Slocum, 1995). Greenwood & Levin (1998, p. 88) underscore that "[Action Research] is about the transformation of power relationships.... [w]ithout an analysis of power relationships, A R is impossible." To reiterate what was introduced in Chapter One, it is critical that participatory approaches be backed-up by institutional commitment, not just rhetoric (Nelson & Wright, 1995). In the context and conduct of participatory research, it is important to acknowledge and seek to more fully understand the power relations and centrality of the dynamics between the researcher and stakeholders, and between the stakeholders themselves (Chambers, 1997; Frisby, Reid, Millar, & Hoeber, 2005; Gaventa & Cornwall, 2001; Greenwood & Levin, 1998; Kothari, 2001; Nelson & Wright, 1995; Rocheleau & Slocum, 1995; Smith, 1997; Wallerstein & Duran, 2003). This is particularly relevant in the health system with its entrenched professional hierarchical structures (Martin, 1996; Meyer, 2001). Huxham & Vangan (2005) point out that while there is a dearth of literature on power in the context of collaborative settings, power issues are nonetheless important in the pursuit of collaboration, especially when participants hold divergent aims. They promote three points on a continuum of power to address this: (a) power over (the relationship and the power this entity has over others), (b) power to (help the relationship and collaborations), and (c) power for 64 (transferring power to others through collaborations). The approach to power that I take in this study largely revolves around power to and power for. Another practical way to characterize power is that described by Starhawk (1987): (a) power-over, (b) power-from-within, and (c) power-with. Typically, notions of power imply a power-over relationship in which conscious or sub-conscious control of others, particularly of the oppressed, is at work and which can lead to widespread damage to body, mind, spirit, and environment (Smith, 1997). Power-from-within emerges from connecting to others and our environment, strengthening and renewing self and soul, and helping to sustain us (Smith, 1997). Power-with concerns our relationships with other people, equals, whom we value. This kind of power relationship is fragile, shared, fluid, gradual, and responsive to group interconnectedness. It also includes a harmonious relationship with nature (Smith, 1997). The critical point here is that PR seeks to "shift power-over relations to power-with and power-from-within." (Smith, 1997, p. 192). Similarly, Nelson & Wright (1995) emphasize the need to shift power in order to allow participants to be active, rather than merely using this shift as a calmative measure to assuage power differentials among people in their organizational structures. Finally, Chambers (1997) specifically decries power as a hindrance to learning, especially among the powerful who may happen to be wrongheaded due, for example, to their position, influence, professional authority, and financial control. This section has provided an overview of the importance of dealing with issues of power and control on many levels. These concern people and their relationships with each other. I now shift to a discussion of the importance of health care geography, a physical environment over which we typically have little power, authority, or control. However, we can recognize and interact with geographical complexities. This field of study provides valuable insights as to how this can be accomplished in the context of health and health care. 65 T h e G e o g r a p h y o f H e a l t h a n d H e a l t h C a r e An Overview of the Evolution of Medical Geography Medical geography is an integrative discipline which draws on the social, physical, and biological sciences and uses concepts and techniques from the broader discipline of geography to investigate health-related issues (Meade & Earickson, 2000). Its main purpose is to address the spatial distribution, dynamics, and patterns of health and disease-related phenomena and mobility among people (Meade & Earickson, 2000). Medical geography has typically emphasized public health over medicine, and new approaches are being sought to encompass social perspectives (Meade & Earickson, 2000). Historically, medical geography has been recognized as an interdisciplinary, multidimensional body of knowledge continually influenced over time by approaches used in other disciplines (Pyle, 1979; Joseph & Phillips, 1984). Medical geography in the pre-1980s comprised two parallel strands—disease ecology and health care provision. There was little scholarly interaction between them and it has been postulated that this indicates a disconnect between medicine and disease research and service planning (Kearns & Gesler, 1998a). In the recent past, concerted efforts were made to confront and bridge the duality between disease and health care (Jones & Moon, 1991, 1992, 1993). More recently, Kearns & Gesler (1998a, p. 1) suggest that medical geography is undergoing a paradigm shift to a "geography of health." Parr (2002) reports that a very strong traditional medical geography still exists, but that new research is focusing on health. Medical geography appears to have evolved to geography(ies) of health (Gatrell, 2002) and geography of health care (Meade & Earickson, 2000). The latter is comprised of two major components: (a) the spatial properties of health care resources (where are the providers, [emphasis in original] and why are they there?); and, (b) accessibility, utilization, and planning of health care services (where do consumers [emphasis in 66 original] seek/receive care, and why there?). For the purposes of this study, I focus on the geography of health care, which is discussed in the next section. The Geography of Health Care Access and Utilization The geography of health care also includes access and utilization of health services. As Meade & Earickson (2000, p. 381) emphasize, however, the most important link is the one between the service user and the provider, and that optimizing resource distribution is possible "only i f this relationship is understood." The call to improve access has been common to a litany of recent health system reform initiatives (Ricketts, Savitz, Gesler, & Osborne, 1994). Accessibility to health care services is a complex subject with a wide spectrum of concepts, characteristics, and behaviours yet to be understood (Martin, Wrigley, Barnett, & Roderick, 2002; Meade & Earickson, 2000; Ricketts, et al., 1994). For example, Penchansky & Thomas (1981, as cited in Cromley & McLafferty, 2002) identify five characteristics of access: (a) availability (the supply of services relative to needs); (b) accessibility (geographical barriers including distance, transportation, time, and cost); (c) accommodation (how services are organized to meet needs); (d) affordability (ability to pay for services); and, (e) acceptability (how users feel about health services, including issues of gender, culture, ethnicity, and sexual orientation). The problem of understanding and resolving issues of access is further compounded by the distinction between potential accessibility (the geographical distinction between people and services in terms of distance, cost, time, and effort required to reach services) and, revealed accessibility (the actual patterns of utilization premised on individual choices, geographical configurations of services, and effects of referrals and regulations) (Cromley & McLafferty, 2002). In terms of spatial factors, distance (as determined by real, perceived, social, and 67 economic measures) is surprisingly overlooked (Meade & Earickson, 2000). Distance is a known barrier (Ricketts, Savitz, Gesler, & Osborne, 1994) and is the common factor in both access and utilization. In BC, the importance of distance is accentuated by large bodies of water, mountains, severe winter weather conditions, and related environmental factors. This continues to legitimize the enduring dictum that availability of care varies inversely with the needs of the population served—the "inverse care law" (Hart, 1971). Moreover, "distance-decay" also factors into access: as distance increases between provider and user, utilization decreases (Gatrell, 2002; Meade & Earickson, 2000). Locality in Health Services Locality is defined as a place where "various social and economic processes come together in combinations which may be specific to the place and may themselves be influenced by the conditions prevailing in the locality." (Curtis & Jones, 1998, p. 86). For example, Bullen, Moon, & Jones (1996) note that locality is the functional area for planning primary health care. Even more important, they contend that "by basing health care planning on small geographical areas, recognizable and known to the public, there will be greater public involvement in, commitment to and understanding of the disposition of health care resources" (Bullen, Moon, & Jones, p. 801). While it is acknowledged that these observations are based on experience in the U K , the converse is evident in health services planning in BC. Here, such planning is more typically based on the provincial scale, the H A scale, or the HSDA scale. Planning at the level of small geographical areas is a practical necessity, but remains relatively uncommon. There are some exceptions in health (see, for example, Green & Shoveller, 2000; Kearns & Gesler, 1998b). This is particularly disturbing for a number of reasons advanced by Curtis & Jones (p. 107), such as: (a) contextual effects operate at different geographical levels, and can explain health inequalities; (b) individuals may experience benefits unequally when they are generated by an 68 intervention aimed at the population; and (c) socially disadvantaged people may experience things differently depending on where they live. In the context of social influences, Curtis & Jones query the usefulness of targeting specific health policies toward particular areas, contending that socially disadvantaged individuals may experience their situations differently subject to their geographic setting. Importantly, Curtis & Jones (p. 107) observe that "there is strong evidence that individual characteristics are very important for health difference and that not all individuals in a geographically defined community will be equally able to benefit from an intervention which is targeted only at the collective and not toward the individual." These and other contextual effects hold true particularly for children and youth because their needs often require unique interventions that are chronologically, developmentally (cognitive and physical), and environmentally sensitive, as discussed in earlier sections. Additional factors contribute to the healthy development of children and youth and require special attention. These are discussed in the next section. Special Considerations around Children and Youth It is well recognized that healthy growth and development, especially in early years, is key to health in later years. Many factors are known to contribute to this, including biological, social, economic, physical, and environmental conditions. It is also increasingly evident that the interdependence of space, place, and health is paramount and largely impossible to displace from health policy-making. This was highlighted at the annual convention (2002) of the Union of B.C. Municipalities (UBCM) which observed that the "crisis in the provincial health-care system has drawn attention away from the vital role communities play in health", especially the role communities should play in helping to develop healthy lifestyles for children (Mclnnes, 2002, p. B6). This role necessarily extends beyond common conceptions of health services, such as recreation, education, social services, child welfare, and justice. 69 This also gives rise to the question of how to account for children, and address their participatory role in health services planning, in particular from a health care geographical perspective. Recent literature suggests the need for children to be more actively and legitimately involved. While possible, it is challenging to engage younger children in the participatory approach (although it is possible for youth, as I have demonstrated in this study). Rather, parents/family of children can provide surrogate or direct input. The latter is consistent with, and builds upon, the critical role that families play in the development, health, and care of children and youth as strongly advocated internationally (BC Ministry of Health and Ministry Responsible for Seniors, 1995a, 1995b, 1995c; Canada Government, 1998; National Association of Children's Hospitals and Related Institutions, 1996; U K Department of Health, 2004b). In urban settings, Davis & Jones (1996) observe that in the context of the new public health agenda (which emphasizes a commitment to community participation and empowerment) children are still seen largely as objects to be fitted into an adult-constructed world; little attention has been paid to children's participation or policies that will enable children to make healthier choices. Likewise, Matthews & Limb (1999) in their review of the "geography of children", stress that research has been fragmented, using only narrow disciplinary perspectives and methodologies. They call for greater children's involvement in planning. Generally, there has been little research to date on the concept of place - a social construct entailing where and how people attach meaning to, and experience, their locales (Cresswell, 2004). Despite the key role of health care geography plays concerning access to services, there is only scattered acknowledgement in the grey literature of how place, as a geographical concept, affects health services planning and delivery. Place and how this important concept relates to health and health services for children and youth are highlighted in the next section. 70 Place and Health Place is different from space. Kearns & Joseph (1993) acknowledge the inherent ambiguity in this distinction; however, space is considered in terms of being geometric or social. The difference between place and space is more a matter of degrees than absolutes. They suggest a recursive relationship between space and place—space affects the character of place and, conversely, place affects space. Massey (1997, p. 315), even more broadly than health, calls attention to the need to "rethink our sense of place", and how we relate to place in order to help retain a sense of locality and particularity. Jones & Moon (1993), in their review of the importance of a local context in health planning, draw attention to the shift from space as a container (spatial analysis) to space as a relational phenomenon (reciprocity of space and human activity). Place is also different from location. A location is a point or area on the earth's surface. Once named and imbued with meaning, it becomes a place (Gatrell, 2002) and, thereby: shapes people's health experience through "mystical influences" (Macintyre, Ellaway, & Cummins, 2002, p. 125); is the centre of lived meaning and social position (Kearns & Gesler, 1998a, 1998b); is where one is known and knows others (Eyles & Litva, 1998); has character (Kearns, 1993); and, holds special significance and satisfies the basic human need for roots (Kearns, 1991). Kearns (1993, p. 140) observes the lack of attention to place as an "experienced zone of meaning and familiarity", asking whether the field of medicine is too detached from the notion of place. He underscores the lack of health services research on a place-centred perspective. The shift from a curative biomedical model to a socio-ecological health model converges on the essence of place. More poignant is the observation by Eyles & Litva (1998, p. 263) that, unfortunately, "[p]lace appears irrelevant to policy because of the usurpation of debate by other discourses that emphasize the patient and the nonplace community." They reinforce the relevance of place in health care policy and service delivery, specifically boundaries and size 71 (size in the sense that smaller units allow more opportunity for participation and accountability). They suggest the idea of formalizing places, and query how "place-based" decentralization and local participation in decision-making could be facilitated. Along this line, Kearns (1991) examines the contribution of health services to the experience of place (as opposed to prior studies on perceptions of place) specifically in the Hokianga district of New Zealand. This study demonstrates the significance of the way provision of health services actively contributes to the vitality of communities, especially in rural areas. Similarly, Warin, Baum, Kalucy, Murray, & Veale (2000) examine the power of place in women's and community health centres. They observe how positive experiences in community health centres transcend social relationships, health-related experiences, and a sense of community. As Joseph & Phillips (1984) remind us, it is at the local level where action must be taken because this is the place where supply and demand transect, and thus, where detailed planning must reconcile with the broader aims. Kearns & Gesler (1998b) call for further research on how restructuring is changing both places and the health experience of residents in those places. This challenge is being taken up in various ways. For example, a recent issue of Social Science and Medicine (2003) specifically focuses on re-thinking contemporary health care in terms of place, rather than space. Casey (2003, p. 2247) characterizes this as "the praxis of place"—an "intimate dialectic"—in a "place-world" (p. 2245). As an example, Kelly (2003) suggests a need to reconceptualize our approach to geographic problems in, for example, rural health. She advances the notion of "journeys" as an alternative to "static descriptions of problems faced in rural health" (p. 2281). She suggests that "journeys, like identities, involve new configurations of place, self, other, and power that are negotiated in complex and emergent ways." This literature serves to highlight a growing effort, at least in the geography of health care, to shift attention from spatial considerations in health services research, planning, and 72 delivery to an awareness of place—space with meaning. Despite decades of such awareness-raising efforts, other health services research disciplines have been surprisingly slow to inculcate this in their respective domains. Equally puzzling is the absence of place-awareness by decision and policy-makers in the practice arena. Throughout my research, I have made a conscious effort to recognize and honour the power of place, made very real to me in my individual interactions with all study participants in their own communities. A few of my interviews were conducted by telephone, but, even then, I had visited their communities during earlier fieldwork. Place, knowledge, and the concepts of boundaries (to be introduced and discussed in Chapter Five in the context of my findings) are closely related. Place, in the context of geography, knowledge and boundaries, is enjoying recent scholarly attention. For example, a special journal edition (Health & Place, 2004) introduces the idea of the geography of knowledge and devotes several articles to this topic. More particularly, the multiplicity of geographies, various forms of knowledge, and their intersections are raised. As Davies, Day, & Williamson (2004, p. 293) observe, "the geography of knowledge draws attention to how different kinds of knowledge are co-constituted through particular places, embodied practices and technological artifacts." In their view, this raises the concept of "boundary work" (p. 294) in a number of ways, including: the production of knowledge, the concentration of power and authority, and public participation processes. Boundaries, in terms of knowledge, locales, and participation, is a concept that I will return to, and expand upon, comprehensively in the context of the findings in my study as discussed in Chapter Five. Such a connection with knowledge, and how it is used in the context of health services and policy research, takes us into the domain of knowledge transfer, linkage, exchange, and translation, as it is variously known. How knowledge flows between, informs, and is used by 73 multiple stakeholders in the research and decision-making arenas is explored in the next section. This discussion is helpful in terms of explaining the differences in perspective between researchers and decision-makers and how this affects the use of knowledge, particularly the use of evidence to inform managerial and policy decision-making. K n o w l e d g e T r a n s l a t i o n A large gap persists between researchers (those who develop theoretical and scientific evidence), and decision-makers (those who make clinical, managerial or policy decisions). This has been described in variations of the "two communities" theory which purports that researchers and decision-makers live in separate worlds, differing in terms of relevancy, values, rewards, norms, interests, cultures, and languages (Brazil, MacLeod, & Guest, 2002; Caplan, 1979; Huberman (1991), as cited by Wallerstein, 1999; Lavis, 2003; Lester, 1993; Susman & Evered, 1978; Walshe & Rundall, 2001). Two decades ago, Weiss (1980, p. 381, p. 2) suggested that knowledge was not "utilized" and policy was not "decided"; rather, knowledge "creepfs]" and policy "accretes". This helps to explain why decisions take shape gradually without a straightforward application of research and analysis. Lomas (1997, p. 1) observes "spluttering progress" in the dissemination and uptake of research. Walshe & Rundall (2001) demonstrate that lack of progress and a conspicuous lack of interest by governments, policy-makers, and managers characterize the research-practice gap in terms of overuse, underuse, and misuse of evidence by decision-makers. Even "factoids"—speculations reported so often that they are considered true (whether or not they, in fact, are)—enter policy-making in the absence of empirical information (Cummins & Macintyre, 2002). The concepts of knowledge utilization and management have been circulating for decades, recently being co-opted by health services research and delivery. 74 Knowledge management, itself, is evolving with the increasing recognition that earlier technological approaches to managing knowledge as a commodity are flawed. Rather, knowledge "resides in people: not in machines or documents" (Hildreth & Kimble, 2002, p. 1). This is an important distinction. Extending this reasoning to the discourse on knowledge transfer in the health arena, this distinction is not yet appreciated. It is usually the technical evidence (data and information) that is the focus of transfer, exchange, and translation, not the resultant change in stakeholder knowledge. Knowledge transfer and exchange (KTE) and knowledge transfer, or translation, both known as KT, are terms that, unfortunately, continue to be used interchangeably in current discourse despite connotative differences. K T is defined in several ways. From a relatively narrow and unidirectional perspective, knowledge transfer is "the process [emphasis added] that transfers research results from knowledge producers to knowledge users" (Birdsell, Atkinson-Grosjean, & Landry, 2002, p. 1). CHSRF earlier framed the discourse in terms of evidence-based decision-making (EBDM), highlighting the need for a "linkage and exchange" philosophy between researchers and decision-makers (CHSRF, 1999, 2000). Since 2002, CIHR has promoted a broad definition of knowledge translation that encompasses their entire spectrum of health research (CIHR, 2002): [Knowledge translation] is the exchange, synthesis and ethically-sound application of knowledge—within a complex system of interactions among researchers and users—to accelerate the capture of the benefits of research for Canadians through improved health, more effective services and products, and a strengthened health care system, (p. 1) CIHR is investing heavily in K T and has developed a strategic direction in this key area (CIHR, 2006). This funding body recognizes that partnerships are critical to effective KT, and that ongoing relationships based on trust between knowledge creators and knowledge users strongly 75 predict success in E B D M . These partners include: researchers, policy makers, administrators, health care providers (formal and informal), the general public and patient groups (including media, voluntary sector, educators, non-governmental organizations), and the private sector. It is useful to approach K T from the perspective of evidence and E B D M . In the context of health services and policy decision-making, CHSRF, in particular, is re-defming what constitutes evidence and, by extension, KT. Significantly, CHSRF has moved away from E B D M to evidence-informed decision-making (EIDM). This shift recognizes the place of scientific evidence, but also honours other contributions to the decision-making process including, for example, values, stories, anecdotes, and life-experiences. Administrative and policy decision-making, in the face of high uncertainty (situations lacking sufficient information to inform decision-making) is weighted toward a reliance on values rather than information (CHSRF, 2000). More recently, CHSRF engaged in a systematic review of the scholarly and grey literature (Lomas, Culyer, McCutcheon, McAuley, & Law, 2005). Their review explores how those who create and use evidence handle it. They conclude that there are three complementary categories of evidence: (a) context-free scientific evidence (used in medicine), (b) context-sensitive scientific evidence (used in social sciences), and (c) colloquial evidence (stakeholder realities). Thus, how one defines evidence, they purport, depends on context, whether it is context-free or context-sensitive. This underscores the very real challenge of appropriately weighting scientific and colloquial evidence to enable decision-making. Finally, CHSRF (2006) sponsored a recent conference entitled "Innovation through Collaboration: Working together for an evidence-informed health system." Continuing ambiguity is acknowledged concerning the term evidence, particularly the on-going debate around the terms evidence-based and evidence-informed. Interestingly, this conference also highlights the growing recognition that the traditional categories of stakeholders in health services research are 76 beginning to self-identify as "hybrids". This indicates a trend toward greater cross-linking of the traditional disciplines. What, then, are the main issues impeding progress in K T , and how might they be addressed? I highlight three here: (a) the epistemological basis of evidence generation; (b) the imperative of local multi-stakeholder involvement; and, (c) difficulties around decision-makers' use of evidence. Collectively, these inform the methods that could serve to advance KT. Evidence is "information based on historical or scientific evaluation of a practice" (Tranmer, Squires, Brazil, Gerlach, Johnson, & Muisiner, et al., 1998, p. 21). However, there is a dearth of systematic studies to explain the impact of information on decision-making (Oh, 1997). Values are central to and shape health care decision-making (Upshur, VanDenKerkhof, & Goel, 2001). In addition to values, competing self-interests, beliefs, and emotions often drive the decision-making process, resulting in poor decisions and outcomes (National Forum on Health, 1997). Thus, it is instructive to combine the concepts of evidence and values in evidence generation and determine how this construct might influence approaches to KT. Upshur, VanDenKerkhoff, & Goel (2001, p. 92) describe such a conceptual model. The model demonstrates the highly interactive nature of evidence generation and acknowledges that it is appropriate to employ a range of research methodologies. They assert "the concept of evidence employed must be robust enough to resonate with practitioners, health-care planners and the wide community of researchers." This interaction also reinforces the expectation that negotiation occurs before the research is undertaken, pointing to the fundamental importance of establishing trust and commitment between researchers and policy-makers (Davis & Howden-Chapman, 1996). In keeping with the earlier focus on the concept of place, Anderson, Cosby, Swan, Moore, & Broekhoven (1999) draw attention to the neglected area of research transfer to local organizations that deliver services to the community. To solve this, they suggest: (a) improved congruence with need and relevance for stakeholders; (b) improved interaction between researchers and users; (c) greater awareness and communication; (d) creation of organizational cultures to inculcate research into decision-making; and, (e) the need for academe to review how researchers work with local agencies. It is also important to humanize the research process, involve all stakeholder groups, and create meaning for and connect with the emotions and experience of practitioners (Canadian Research Transfer Network & Health Research Transfer Network of Alberta, 2002). The K T process must also overcome barriers to decision-makers' use of evidence, such as those identified by the National Forum on Health (1997): (a) lacking pertinent evidence; (b) lacking consensus; (c) using evidence inappropriately; (d) dealing with lag times between research and its application; (e) being overwhelmed by information; (f) failing to consider the impact on health outcomes; (g) having differing and changing values; (h) lacking accountability for decisions; (i) relying on tradition and judgment; (j) pointing to protection of privacy and confidentiality; and, (k) having to use poorly coordinated health information systems. An equally important consideration is the context of the evidence, ranging from the particular (personal) to the general (population). In the context of evidence-based practice, for example, Bowman, Snider, & Ellis (2003) suggest that stories play a key role as particular evidence, especially to describe barriers to research transfer in organizations. As Upshur, VanDenKerkhoff, & Goel (2001) suggest, evidence is an interaction between two axes: the range of evidence (from a context of particular to general) and the range of methodologies used (from an emphasis on measurement to that of meaning). They suggest that this construct: (a) integrates diverse disciplinary epistemologies; (b) legitimizes qualitative evidence; and, (c) allows values to be included in decision-making. This construct calls for generating evidence for decision-making that respects these three characteristics. From the perspective of meaning, this can include 78 qualitative methods, such as the methods I used in this study: semi-structured interviews, focus groups, and a search conference. Additionally, quantitative methods (such as using GIS technology as a tool for health services data analysis and mapping) can contribute to EIDM from a measurement perspective. Combining such methods can lead to more effective ways to translate knowledge and share complex information with diverse stakeholders. This reinforces a central role of praxis: the constant iterations between theory and practice, and between knowing and acting. Unfortunately, the research and decision-making solitudes continue to exist more independent of, rather than interdependent on, each other. Success here is contingent upon the extent to which praxis is seen to provide "coherence across intersecting social worlds" (Star & Griesemer, 1989, p. 393). There are many stubborn barriers to making real progress between these social worlds; however, increased awareness of, and an awakening to, the role of praxis in this context will go a long way to building resilient relationships. As Evans (2006, p. 20) succinctly frames it, getting K T to work unimpeded will necessitate that we explicitly face our "unexamined habits of thought and behaviour." This is the relevance of KT . This chapter has taken a journey into a number of themes and disciplines. It has reviewed the scholarly and grey literature in order to help make sense of the inherent complexity of the health system and how different disciplines can coalesce to clarify issues related to health services research, planning, and service delivery for children and youth. I now shift to a technical journey that explores the research methodology used in this study. 79 CHAPTER THREE: Methodology and Data Analysis R a t i o n a l e f o r u s i n g a P a r t i c i p a t o r y R e s e a r c h A p p r o a c h As reviewed in Chapter Two, participatory research is an effective and respectful way to conduct extensive collaboration with multiple stakeholders in health services and to effect action. While taking a predominantly local community-based approach, this study recognizes a health systems perspective, which was also reviewed extensively in Chapter Two. To focus exclusively on planning at the local community level would detract from the critical interrelationships and interdependencies characteristic of a complex system. The reverse is also true. As Green & Mercer (2001) and Green, et al. (1995) urge, participatory research is a broad and systematic approach that stretches from community to academia and involves stakeholders affected by, or who may potentially use, the research. I have taken account of the historical neglect of local involvement in health services research and throughout this study have consistently engaged local stakeholders in the research process. Effecting community-based, capacity-building strategies and programs must involve individuals and communities in a meaningful way (Veazie et al, 2001; Moyer, Coristine, MacLean, & Meyer, 1999). Linkages between research, practice, and policy are critical to the planning and delivery of health services, and ultimately to the success of the health system. Through a participatory research approach, the necessary linkages can be formed and nurtured to better understand the questions relevant to local communities, to undertake the research to appropriately answer such questions, and to facilitate action through planned change processes. The concept of health reform—change—should include local participation and action. This is where the day-to-day realities of health service delivery are actually confronted. Conversely, there is a risk of 80 government using such participation as a convenient means to other ends, for example, to post hoc legitimize public policy, diffuse public criticism, or delay action (Zakus & Lysack, 1998). E t h i c s A p p r o v a l P r o c e s s The ethics approval process entailed a number of stages. The initial three approval processes spanned nearly six months. The University of British Columbia Behavioural Research Ethics Board (BREB) approved the qualitative component of the study contingent upon approvals from the CFRI Research Review Committee, the N H A Research Review Committee, and the Nisga'a Health Authority1 4 (had they decided to participate). Additionally, BREB required a separate ethics approval process for the quantitative component, which used secondary administrative child health utilization data for geographic information systems mapping. This, in turn required additional ethics review by CFRI's Research Review Committee and the NHA' s Research Review Committee. Investigator-initiated amendments and routine annual ethics reviews added to the process, resulting in some two-dozen certificates and/or letters of approval during the course of the study. This experience underscores the challenges associated with a participatory research (PR) approach using mixed methods, covering multiple jurisdictions, involving multiple agencies, and continuing over an extended timeframe. It also draws attention to a number of ethical considerations and possible negative consequences, even harm, that must be acknowledged, particularly in the context of a participatory research approach involving participants who are local community stakeholders. The challenges posed by using PR and related approaches in both developing and developed countries are well-described in the literature and are pertinent here in the context of 1 4 The Nisga'a Health Authority Board decided to not participate given competing priorities of the day. Had they agreed to proceed, I would have been invited to help develop a prototype Aboriginal community ethics approval process. 81 ethics associated with a PR approach (Angeles & Gurstein, 2000; Botes & van Rensburg, 2000; Church, Saunders, Wanke, & Pong, 1995; Cooke & Kothari, 2001; Cornwall & Jewkes, 1995; Forester, 1999; Israel, Schulz, Parker, & Becker, 1998; Jewkes & Murcott, 1998; Minkler, 2004; Wallerstein, 1999; Wallerstein & Duran, 2003; Zakus & Lysack, 1998). I have summarized these ethical challenges into three categories, as follows: People (stakeholders): 1. appropriate representation, especially by the vulnerable and marginalized 2. participant willingness, motivation, and availability 3. competing institutional expectations and demands 4. community sociopolitical dynamics Participation (relationships): 1. selection of, and ongoing participation by, stakeholders 2. bias toward seeing communities as homogeneous, consensual, and harmonious 3. lack of trust and respect between participants 4. issues of participant autonomy and maneuverability 5. potential tyrannies such as the unjust distribution and use of power and control 6. terms and conditions of partnership 7. paternalistic treatment of participants 8. conflicts arising from differences in goals, values, beliefs, priorities, and language Processes (research practices): 1. reconciling multiple needs and agendas 82 2. imbalances of funding, interests, and information 3. inadequate researcher conceptualization of community 4. risk of over-simplifying complex communities 5. potential inhibiting and prescriptive role of the government 6. gate-keeping by those having local influence 7. bias toward tangible issues 8. undue expectations for immediate results 9. dealing with data arising from multiple sources 10. need to balance research and action 11. ensuring on-going sustainability The foregoing issues raise the possibility of real and/or perceived harm to the study participants being unintentionally generated through the research process. I exercised great caution to reduce the risk of negative consequences or unintentional harm to the participants and communities engaged in this study. Many of the communities engaged in this study are small and a researcher is conspicuous. Confidentiality and protection of privacy are practical concerns, particularly when participants are, for example, sole clinicians, sole managers, or parents of children whose substantive injury or illness is likely common knowledge in a small community. I was also sensitive to the possibility of raising false expectations around improving health services for children and youth. Continuous involvement of participants in the three qualitative data-gathering methods over an extended period helped me to determine whether there were any potential negative consequences arising from my research, none having come to my attention. 83 G a i n i n g A c c e s s t o t h e R e s e a r c h S i t e I conducted the study in the North West HSDA, one of three HSDAs in the NHA. As discussed in Chapter Two, the N H A has the largest area of five HAs, representing nearly two-thirds of the total land area of the province. Its total population in 2005 (BC Ministry of Labour and Citizens' Services, 2006) was approximately 307,000 of whom 29%, or 89,030 are children and youth 19 years of age and under. The population distribution is shown in Figure 2. Figure 2. BC Census Population by Dissemination Area Map. Note: From http://www.bcstats.gov.bc.ca/data/pop/maps/PopDot2001_l.gif Copyright © Province of British Columbia. All rights reserved. Reprinted with Permission of the Province of British Columbia, www.ipp.gov.bc.ca British Columbia 2001 Census Population by Dissemination Area \ One dot equals 25 persons \ 1 (Randomly Distributed Dots) Victoria Area nctorta Prepared by BC State Source: Statistics Canada, 2001 Census Approximately 13% of the residents are Aboriginal (NHA, 2003b). There are 16 Traditional First Nations Tribal Groups residing in the N H A ; however, it is important to recognize that the health authority administration borders do not consistently align with 84 traditional lands (NHA, 2003). This is discussed further in Chapter Five (see Figure 16). The North West HSDA is a very large rural and remote geographic area representing approximately 27% of the provincial land mass, yet was home to only 84,392 people15 in 2005 (BC Ministry of Labour and Citizens' Services, 2006). Of these, 25,072 or 29.7% are children and youth 19 years of age and under. The North West HSDA has 25 bands16 and the highest proportion of Aboriginal residents in the province at approximately 22% (NHA, 2003). A number of events ultimately led to the selection of this research site. In 1999,1 was invited to facilitate a planning process to address the North West regional service delivery needs of neonates, children, and youth. This regional collaborative planning process (1999 - 2001), with linkages to provincial and tertiary services, resulted in a draft report, "Caring for Children and Youth in North West British Columbia: Towards a new model for providing pediatric, adolescent and neonatal services" (North West Planning Group, 2001). Building on the success of this earlier work, I approached the senior management of the N H A to ascertain their interest in participating in my doctoral thesis research. I then drafted a North West health services redesign framework proposal for children and youth, which was intended to align with the N H A redesign plan. Subsequently, in 2002, this was approved by the senior management of the N H A . The N H A wanted a research approach that melded with their incremental, "made in the North" redesign strategy (NHA, 2002); one that was also premised on their mandate of community stakeholder collaboration and participation. My study was also funded, in part, by the North West HSDA. 1 5 This is comparable to the 84,529 residents in 2001 (see Centre for Health Services and Policy Research http://www.chspr.ubc.ca/files/publications/2004/chspr04-12/Healthauthoritvdemographics.pdf). However, the North West has experienced a net outflow of population, presumably due to the challenges of a predominantly resource-based economy. In 1995, for example, the N W H S D A population was 88,294 (BC Ministry of Labour and Citizens' Services, 2006). 1 6 A band is "the basic unit of organization of First Nations for political and administrative purposes" (NHA, 2003, p. 15). 85 Concurrently, the B C M C F D undertook a province-wide transformation of services. The strategic shifts included community-based service delivery to enable communities to develop and deliver services, and working in partnership with families and communities to create a model that would better meet the needs of children (pCMCFD, 2002). While this proceeded in the context of a plan to reduce the overall B C M C F D budget by 23% over three years, it also created a timely opportunity for collaborative planning to ensure integration of community-based services for children, youth, and families in the North. However, several attempts to engage the support of the North Region B C M C F D proved unsuccessful. This was due in large part to their preoccupation with major structural reform and downsizing, financial challenges of the day, and senior management turnover in the North region. In their New Era commitments, the BCMOHS and the B C M O H P 1 7 highlight the need to more actively engage patients and consumers in planning the health system. Importantly, a number of provincial and federal commissions and reports also identify a pressing need for consumer/citizen participation in health system reform. This serves to underscore the importance and expectation of multi-stakeholder collaborative planning. A major planning and redesign challenge persisted in terms of how the BCMOHP and the BCMOHS, including the recently formed HAs and their respective HSDAs, would address their well-documented strategy. This specified "ensuring appropriate and productive stakeholder participation in the development of planning approaches in a newly configured health structure", and advocated that "[h] earth services should be developed, delivered, and evaluated in collaboration with consumers and should respect the diversity of all British Columbians" (BCMOHP, 2002b, pp. 2-3). Purportedly, attention was focused on accountability through participation based on the development of workable partnership models and the interface 1 7 The B C M O H P was subsequently merged into a single B C M O H S . 86 between communities and service providers and managers. This was a laudable effort; however, the literature suggests that our ability to understand the complexities of such partnership models is still at a very early stage (Cornwall, Lucas, & Pasteur, 2000). At that time, I presumed somewhat naively that the NHA-wide redesign initiative would proceed concurrently with my research project. Similarly, I envisioned that the child and youth health services component would initially focus on the North West HSDA and then proceed in conjunction with my research project. I anticipated that this approach would help (re)define community and (re)defme rural with health as a central pillar, focus on sustainability, and ensure linkages with specialized centres (Troughton, 1999). But, due to the political and fiscal realities of the day, many of these facilities and programs were at risk of severe curtailment of pediatric and/or maternal services, or even outright closure. Contrary to my presumptions, progress on the NHA-wide redesign initiative for integrating child and youth health services was effectively stalled; however, it was apparent that my research in the North West HSDA was being supported. P a r t i c i p a t o r y R e s e a r c h i n a R u r a l C o n t e x t Participatory research approaches most effective in addressing a rural context are those that genuinely respect and actively engage rural participants in and with their communities, and over which they can share power and control. A rural context is a "context for action" and is characterized as: (a) an essential context for design and delivery; (b) unique, not simply an extension of urban; (c) diverse, having local and regional differences; (d) dynamic; and, (e) expressive, in developing unique manifestations of democracy and action (Ramp, 1999, pp. 11-12). In a rural health context, the need for public participation is enhanced. Individual and community health in rural settings is strengthened by public participation in the decision-making process, helping to amplify community spirit (Kulig, 1999; Ramp, 1999). Supporting this 87 observation, the BCMOHP, in its New Era change strategy, expects local health service delivery areas to "ensure community participation in health care decision-making and protect local input into the delivery of health services" (BCMOHP, 2001a, p. 3). In the context of this study and the high proportion of Aboriginal population in predominantly rural and remote settings, a participatory approach to research and service delivery is essential. This is recognized at the provincial policy level (BCMOHP, 2001) and, similarly, is supported by the N H A as indicated in their Aboriginal Health Services Plan (2003b): The Northern Health Authority believes that community consultation is key to identifying and developing plans to meet the needs of the local community, and has been identified as essential when working with Aboriginal issues, (p. 1) M i x e d M e t h o d s D e s i g n I used a mixed methods design for this study. This is defined as one "that focuses on collecting and analyzing both quantitative and qualitative data in a single study (Creswell, 2003, p. 210). Mixed methods research is relatively new. Thus, a number of unresolved issues are still under debate, including: (a) use of nomenclature, (b) utility (c) paradigmatic foundations, (d) design issues, (e) drawing inferences, and (f) logistics in the conduct of such research (Teddlie & Tashakkori, 2003). The use of mixed methods in health research is increasingly supported in the literature (Morgan, 1998). It is important that the methodologies and approaches used in scientific investigation ensure that relevant data are observed, heard, gathered, and analyzed in order to arrive at valid findings and conclusions. Both qualitative and quantitative information are necessary for health research to provide insight into local health situations (van Oers, 1993). In the context of the research question, it is important to try to capture the relevant data, especially since certain kinds 88 of data are beyond the individual reach of either of these methodologies. However, the unfortunate tendency to pit quantitative against qualitative methodologies undermines the growing trend and need to mix these approaches. St Leger and Walsworth-Bell (1999, p. 107), for example, polarize this situation as an "apparently irreconcilable divide." They assert that this is an obstacle that will not allow us to achieve "the broadest understanding of both the humanistic and the mechanistic factors involved in the researching, planning, development and implementation of health service delivery." They attribute this to "academic snobbishness on one side and deliberate obfuscation on the other, though debate on the issue is dressed in arcane philosophical argument." Tashakkori & Teddlie (2003) observe merits in each methodology, but also note the criticism advanced by proponents of the other orientation. They observe that social and behavioural research has been typically dominated by quantitative methods and positivist/post-positivist worldviews. More recently (particularly the last two decades), and as a reaction against the dominant quantitative methodology, qualitative methodology has emerged with constructivist worldviews. Others are more conservative in their perspective and see the distinction as unclear, perhaps better characterized as complementary strategies (Mason, 2002; Snape & Spencer, 2003). Ong (1993) simply concludes that the debate is obsolete; it's an issue of when and why a particular methodology is used to answer a research question. Evolving health services research, and its many domains, is ideal territory for combining methodologies. This is critical to gaining insights far surpassing what single methodologies could accomplish on their own. The next section addresses the two methods used in this study—a priority qualitative component with a nested quantitative component. While this study is a mixed methods design, I must emphasize that the quantitative component in this case is a very small aspect of this study. I use quantitative data to demonstrate some of the shortfalls in using the BCMOHS health services administrative database; that it can be mapped to enable the visualization of complex data; that it can be used to demonstrate activity at a local (LHA) level in ways that many stakeholders are not accustomed to seeing such data; and, that it assists in dialogue around the priority health services issues facing certain jurisdictions, for example, serious historical inadequacies in child and youth mental health services throughout the North West HSDA. Priority Qualitative Component The characterization of qualitative data as a priority is described as a choice, depending on the weight given to the method, the researcher's interests, the audience, and the emphasis of the study (Creswell, 2003). I determined that the qualitative component is the priority component in this study, given my personal propensity to a multiple stakeholder participatory approach, the receptivity to this approach during the phase of gaining access to the research site and based on my prior experience in the North West, and because I was using a PR approach. This choice is corroborated by Lincoln & Denzin (2000, p. 1049): "Qualitative inquiry is properly conceptualized as a civic, participatory, collaborative project. This joins the researcher and the researched in an ongoing moral dialogue". Nested Quantitative Component The nested component in this study is quantitative (Creswell, 2003; Tashakkori & Teddlie, 1998). In this study, geographic information systems (GIS) software is used specifically as a tool. GIS is an enabling-technology tool, a computer-based system, which integrates, analyzes and maps spatially referenced or geographical data and carries out management and decision-support tasks (Cromley & McLafferty, 2002; Heywood, Cornelius & Carver, 1998; Lang, 2000; Richards, Croner, Rushton, Brown, & Fowler, 1999). This technology substantially improves health planning, particularly at the community level, by better organizing and linking data in planning health services, and by helping community stakeholders visualize and understand complex health issues (Lang, 2000; Richards, et al, 1999). Through the shared use of 90 GIS, the local citizenry can make its case, influence health policy, and assist policy-makers (Cromely & McLafferty, 2002). The forum during which this active participation and sharing took place was during the two-day search conference, which included all stakeholders, including the local public, clinicians, managers, and policy-makers. The search conference method is explained in another section later in this chapter. S a m p l i n g P r o c e s s This study uses a combination of strategic, purposive, and snowball sampling processes. The aim of strategic sampling, as opposed to representational sampling, is to create a relevant range of contexts, experiences, and processes (Mason, 2002). As Maxwell (1996) reinforces, sampling is a deliberative strategy to select people, settings, events, and processes to generate information that is difficult to elicit from other sources. The purposive sampling process includes snowball sampling, particularly in the identification of Aboriginal participants. Purposive sampling (also called purposeful or judgment sampling) identifies information-rich participants to share in-depth insight and understanding of issues that are central to the study (Patton, 2002). Snowball, or chain sampling, proceeds to identify additional information-rich cases, with the sample enlarging as key names are repeatedly mentioned (Patton, 2002). This process includes theoretical sampling, but without rigid adherence to the basic tenets of grounded theory as originally espoused by Glaser & Strauss (1967). The grounded theory method does, in fact, encourage research-specific flexibility. Ritchie, Lewis, & Elam (2003, p. 80) describe theoretical sampling as "a particular kind of purposive sampling in which the researcher samples incidents, people or units on the basis of their potential contribution to the development and testing of theoretical constructs". Additionally, the process is iterative and continues to data saturation. I wanted to ensure early inclusion of participants in each of the ten Local Health Areas (LHAs) comprising the study site, 91 and by each of the four stakeholder groups under study, and in the context of a knowledge translation strategy. Thus, at the outset of the sampling stage, I followed a process characterized by Mason (2002): In its more general form, theoretical sampling means selecting groups or categories to study on the basis of their relevance to your research questions, your theoretical position and analytical framework, your analytical practice, and most importantly the argument or explanation that you are developing. Theoretical sampling is concerned with constructing a sample...which is meaningful theoretically and empirically, because it builds in certain characteristics or criteria which help to develop and test your theory or your argument, (p. 124) In keeping with the intent of theoretical sampling in grounded theory, the use of two additional qualitative methods—focus groups and a search conference—provide further opportunities for qualitative methods triangulation, an iterative process, and data saturation. The aims of theoretical sampling are to fill gaps in data, categories, and emerging theory, and to refine ideas. This does not necessarily imply the need to increase the original sample size; rather, the same subjects can be involved (Charmaz, 2000). The focus groups and search conference involved the same study participants who participated in the individual semi-structured interview process. I created and maintained a sampling matrix diagram throughout the sampling and data gathering phases to visually track participation by all ten of the North West LHAs. This was done to ensure an adequate number of diverse participants from each of the four stakeholder groups, and to establish that Aboriginal participation reasonably reflected the proportion of Aboriginal people to the regional population. Despite lengthy communications and recognition of the value in participating, the Nisga'a Health Authority ultimately did not join the study. 92 According to a senior manager, this was due to unexpected new timelines faced by the Board pursuant to its elections being moved forward. The Nisga'a also recognized that they did not have a research ethics protocol in place which they deemed to be a necessary condition of involvement. However, they did express interest to develop such a protocol using my research study as a prototype, should they decide to participate. Unfortunately, this did not occur, and the study proceeded without the benefit of Nisga'a participation or data, resulting in this sampling limitation. This decision may ultimately affect how and when service delivery planning by the Nisga'a Health Authority will integrate with the North West regional planning process for child 18 and youth health services, facilated through this study. Study participants were selected from four stakeholder groups: general public/service recipients; clinical service providers; managerial decision-makers; and, policy decision-makers. Also included were clinical service providers, and/or managerial decision-makers, and/or policy decision-makers in the N H A , Children's & Women's Health Centre of BC (C&W, an agency of the PHSA), B C M C F D , BCMOHS and, later in the study, the BC Provincial Government Social Policy Integration Team. 1 9 A further sampling delimitation relates to the limited number of participants from other sectors such as education and justice. However, this deficit was partially offset by participation from the Government Social Policy Integration Team, and because at least three study participants had direct linkages with the education sector, for example, as a local school board chair, a local school board member, and as an employee of a school board. Finally, the sample size was delimited by the number of children and youth participants. I had originally planned to recruit at least two youth, one First Nations from the Nisga'a L H A and one Caucasian 1 8 The Nisga'a Valley Health Board (NVHB) was incorporated in 1984 and is responsible for its own health services. The N V H B planning processes do not currently integrate with those of the North West HSDA (NHA, 2003). 1 9 The role of this team included working with approximately eight provincial Ministries, and a specific cross-ministry project involving an integrated approach to services for children with special needs. 93 from a different L H A . However, with the ultimate non-participation by the Nisga'a and the already relatively large sample size, I did not pursue a replacement and decided to proceed with 21 one youth with special needs. The inclusion criteria were straightforward. People who had used or were currently using, and/or were working or volunteering in, the health system including health services for children and youth living in the North West HSDA, were eligible. Using guidelines from BREB, I ensured that no one was consciously excluded because of culture, language, religion, race, disability, sexual orientation, ethnicity, gender, or age. Clinical service providers, managerial decision-makers, and policy-makers were contacted in person. Potential general public/service recipients were contacted initially by a third party health service providers such as a family physician, pediatric specialist, or community health nurse. As a rule, these providers were already purposively sampled and engaged in the study prior to their suggesting or initiating contact with potential subjects. Where feasible a Letter of Initial Contact was provided to potential subjects at that time. More commonly, the process entailed a clinical provider suggesting possible subjects based on suggested selection criteria I shared with them. I then followed-up via telephone and/or email to ascertain interest and, if affirmative, a Consent Form (see Appendix C) was emailed. A further telephone call was made to more fully explain and study and answer any questions. This typically resulted in the scheduling of an interview to take place during my next field visit. This presented logistics and scheduling challenges given extensive travel requirements in the North West, especially during the Winter months. 2 0 Participation by the Nisga'a was actively sought, without success, until December, 2005. 2 1 This youth proved to be very popular and contributed significantly to the study. In fact, one of the adult participants was so inspired that she requested a picture of him to remind her of why she was doing her work. 94 A l l interviewees, focus group attendees, and search conference attendees were given thank you cards including a cash honorarium (see Appendix C, p. 3 for details), a receipt, and a business card with contact information in case there were any follow-up questions or concerns. Additionally, participants were offered a capped reimbursement for expenses related to daycare and/or travel-related expenses, and reimbursement for any direct loss of income in order to attend a focus group and the search conference (see Appendix C for amounts). Complimentary food and refreshments were provided for all participants during both days of the search conference. Infrequently, financial hardships were raised and addressed on a case-by-case basis in order to ensure unfettered participation. This also required an amendment to the study's ethics certificates of approval to allow me to exceed the cap on participant expense reimbursement as might be necessary in my judgement. D a t a G a t h e r i n g I gathered data in a variety of settings, depending on subject preference and logistics. I physically visited at least once, but in several cases multiple times, all of the LHAs comprising the North West HSDA, with the sole exception of the Nisga'a Health Authority as discussed earlier. Additionally, this involved collaboration with stakeholders in other organizations, agencies, authorities, and various provincial Ministries who were engaged in some capacity with the planning, co-ordination, and/or provision of health services in the North West HSDA. Over the course of several field-visits by motor vehicle during the course of the study, I amassed countless hours and over 13,000 kilometers of travel. Occasionally, I travelled by ferry and air (including a float plane from a remote coastal Aboriginal community). Qualitative Component Qualitative data relevant to child and youth health services were collected, integrated, and analyzed through an iterative sequence of methods in keeping with a participatory research approach. This sequence of multiple qualitative methods included semi-structured interviews, focus groups, and a search conference. Qualitative research often employs multiple methods in health care (Pope & Mays, 1999). The reasons for this include: bringing different insights to the study (Ritchie, 2003); answering the research questions in different ways or from different angles (Mason, 2002); enhancing data quality through methods triangulation (Denzin & Lincoln, 2000; Mason, 2002); and, testing different analyses and explanations against each other (Mason, 2002). Originally, I envisioned that this study would include document review and naturalistic observation (participant observation; for example, attending selected meetings as invited or permitted by any of the stakeholder groups). However, this expectation proved impractical given the very limited progress made by the N H A in planning and implementing integrated child and youth health services in the North West HSDA and the N H A . This delay was confirmed with the N H A corporate office during the course of the study. Piloting the Semi-structured Interview Question Guide The interview questions were piloted with the recruitment of four colleague acquaintances, representing each of the four stakeholder groups in the study. This included a parent, a managerial decision-maker, a clinical decision-maker, and a policy decision-maker. This feedback generated from this exercise helped me to clarify, refine, and improve the questions prior to use in the field. Semi-structured Interviews In the view of Kvale (1996, p. 1), "[fjhe qualitative research interview attempts to understand the world from the subjects' points of view, to unfold the meaning of peoples' experiences, to uncover their lived world prior to scientific explanations." Qualitative research interviews are most appropriate in circumstances where there is a focus on meaning, where individual perceptions of processes are important in a larger context, and where historical 96 perspectives are required (Robson, 2002). The purpose of interviewing is to "derive interpretations, not facts or laws.. ..aiming to understand the meaning of respondents' experiences and life worlds" (Warren, 2001, p. 83). Generally, there are three types of interviews: structured, semi-structured, and unstructured (Robson, 2002). Semi-structured interviewing is one of three qualitative data gathering methods that I use in this study. Semi-structured interviews, typically between 60 and 90 minutes duration, were conducted with subjects in each stakeholder group. Forty-three subjects were interviewed over a period of sixteen months, with the majority conducted between December, 2003 and July, 2004. Table 1 on the following two pages outlines the stakeholder groups, place, and date of the interviews conducted during the course of the study. Prompts were used extensively to increase the breadth and depth of responses (Legard, Keegan & Ward, 2003). Appendix D lists the questions and examples of prompts used to guide the interview sessions. 97 Table 1. Semi-structured Interviews—Stakeholders, Locations, and Dates. STAKEHOLDERS LOCATION DATE Manager Prince George December 8, 2003 Policy-maker Prince George December 8, 2003 Manager Prince George December 8, 2003 Clinician . Smithers December 9, 2003 Clinician Hazelton December 10, 2003 Clinician Terrace December 11, 2003 Clinician Terrace December 11,2003 Manager Terrace December 11, 2003 Manager Terrace December 12, 2003 Clinician Terrace December 12, 2003 Policy-maker Prince Rupert December 15,2003 Clinician Prince Rupert December 15, 2003 Policy-maker Prince Rupert December 15,2003 Manager Prince George February 9/14, 2004 Parent Smithers February 9, 2004 Parent Hazelton February 10, 2004 Manager Terrace February 11,2004 Parent Terrace February 11,2004 Youth Kitimat February 11,2004 Policy-maker Terrace February 12, 2004 Parent Prince Rupert February 12, 2004 Policy-maker Burnaby (from Victoria) May 14, 2004 Policy-maker Victoria May 17, 2004 Continued next page... Table 1. Semi-structured Interviews—Stakeholders, Locations, and Dates. Manager Victoria May 18, 2004 Clinician Vancouver May 31,2004 Manager Vancouver June 8, 2004 Clinician Dease Lake July 12, 2004 Policy-maker Telegraph Creek July 12, 2004 Clinician Telegraph Creek July 12, 2004 Manager Telegraph Creek July 13,2004 Manager Hartley Bay July 15,2004 Manager Kitimat July 17, 2004 Clinician Smithers July 17, 2004 Policy-maker Hazelton (via telephone) July 19, 2004 Manager Old Massett July 27, 2004 Manager Skidegate July 28, 2004 Clinician Queen Charlotte City July 28, 2004 Policy-maker Skidegate July 28, 2004 Manager Prince Rupert (via telephone) September 9, 2004 Parent Skidegate (via telephone) September 10, 2004 Manager Vancouver October 6, 2004 Manager Iskut (via telephone) March 10, 2005 Policy-maker Victoria (via telephone) April 13,2005 Focus Groups The popularity, use, and acceptance of focus groups has increased widely in social research (Finch & Lewis, 2003; Morgan, D., 2001; Robson, 2002), including health services research (Kitzinger, 1999). Focus groups are a type of group interview in which the emphasis is 99 on the generation of data, guided by the researcher, through interactive communication among, ideally, four to eight participants who act as co-researchers (Kitzinger, 1999). It is a common method of data generation in action research studies where active participation is sought (Kitzinger, 1999). It can be used as the primary method of data gathering, or in conjunction with other methods (Robson, 2002). Depending on the nature and focus of the study, focus groups can be heterogeneous (differing in background, position, or experience) or homogeneous (similar in background, position, or experience) (Robson, 2002). There are pros and cons to each approach; however, the general practice is to attain reasonable diversity (Finch & Lewis, 2003). A l l study interviewees, up to the point of scheduling the focus groups, were invited to participate in a community closest to them. In several cases, this precluded participation due to a significant burden of travel by vehicle, ferry, or airplane for a two-hour meeting. Participants were advised by email that this was a semi-structured group interaction during which participants were co-researchers who would comment, reflect, and add to each others' thoughts and perspectives that might arise in the meeting. They were advised that they would be conversing mainly with each other rather than to me as researcher. I indicated that my role was to facilitate and guide the meeting, and to address some or all of the questions which were asked in the earlier interviews. Thus, the content area was reasonably familiar to each participant. I also provided a brief overview of my early analysis of the data thus far so that emerging themes could be explored collectively. I held three focus groups during one week in September, 2004, in Prince Rupert, Terrace, and Smithers. These were followed by one focus group held in Victoria in November, 2004. There were five to eight participants in each group (heterogeneous) and the meetings lasted about two hours. The goal was to include at least one participant from each of the four stakeholder groups (public, managerial, clinical, and policy) and generally cover the geographical context. In 100 practical terms this meant holding three focus groups, one in each of the three North West administrative clusters—west (Prince Rupert), central (Terrace), and east (Smithers). The fourth focus group included participants in the Lower Mainland and Vancouver Island areas who were involved with child and youth health services in the North West, including participants from BCMOHS and Health Canada FNIHB. Prince George, as home to the N H A corporate office and several study participants, was considered as a fifth site; however, stakeholder heterogeneity was not possible. Several logistical challenges were encountered such as scheduling the focus groups to optimize travel time, distance, weather conditions, and expenses for all participants, including myself, and the need to achieve reasonable stakeholder heterogeneity in each focus group. Table 2 shows the composition of stakeholders participating in each of the four focus groups, where the focus groups were held, and their respective dates. 101 Table 2. Focus Groups—Stakeholders, Locations, and Dates. STAKEHOLDERS LOCATION DATE 1 Parent 2 Managers 2 Clinicians Prince Rupert September 22, 2004 1 Parent 2 Managers 4 Clinicians 1 Policy-maker Terrace September 23, 2004 1 Parent 3 Clinicians 1 Policy-maker Smithers September 24, 2004 1 Clinician 2 Managers 2 Policy-makers Victoria November 26, 2004 Search Conference A search conference is a collective learning process that permits considerable variability in length, facilitation, participation, configuration, and rules. Emery & Purser (1996, p. 4) describe it as "a participative event that enables a large group to collectively create a plan that its members themselves will implement....It is an excellent means of planning large-scale systems change in real time, and it generates excitement, energy, and purposeful behavior". Most importantly, they state that "people learn how to move forward together as a unified community, and.. .to accept joint responsibility for their common purpose". A proprietary variation, "future search" (Weisbord & Janoff, 2000), builds on the notion of finding common ground in organizations and communities, which leads to taking personal responsibility, making expedient 102 action plans, and forming durable relationships across key boundaries. Greenwood & Levin (1998) describe a framework which integrates five key processes: (a) sharing stakeholders' histories, (b) developing a shared vision, (c) engaging participants in the creation of action plans, (d) collectively prioritizing alternative action plans, and (e) creating volunteer action teams who commit to addressing the issues. The Greenwood & Levin (1998) framework was used as a guide in this study. Additionally, a consultant in public sector strategic planning and governance, with whom I worked in another capacity, offered practical advice around structuring the search conference based on his extensive experience. Through a combination of plenary and small group dialogues, the goals of this planning conference were to: • refine and expand upon the findings emerging from the previously conducted semi-structured interviews and focus groups • co-create a shared history and the current reality of child and youth health services in the North West • co-create an ideal future for child and youth health services in the North West and prioritize realistically attainable goals • co-create action ideas and strategies to realistically attain prioritized goals • co-create action teams to follow-up on, and be responsible for, prioritized ideas, strategies, and goals. A l l of the participants in the study up to the timeframe of the search conference in April, 2005 were invited to participate. At this point, of the 43 participants, two managers had taken positions elsewhere and moved away, and one policy-maker had retired. Seventeen people participated in the two-day search conference. Table 3 shows the composition. 103 Table 3. Search Conference—Stakeholders, Location, and Date. STAKEHOLDERS LOCATION DATE 1 Parent 1 Youth 5 Managers 7 Clinicians 3 Policy-makers Terrace April 19&20, 2005 During the opening plenary session, I acknowledged, on behalf of the participants, the traditional territory (Tsimshian) on which the search conference took place. I also arranged for a Aboriginal Elder from the local Kitselas Band in Terrace to participate, through a prayer, in both the opening and closing plenary sessions. In day one, participants explored shared history (to learn and build upon each other's interpretation of history and co-generate history), followed by sessions on the ideal and probable futures (creating a shared vision and goals). This process also helped to define the key objectives emanating from broad goals. In day two, participants examined action strategies that support the goals and objectives. They also grouped and prioritized the action issues (including objectives). The final stage created action teams to address the agreed-upon actions. Although not typical in a search conference, I actively participated on two occasions. First, during the introductory stage, I presented an overview of the research project and the findings to date. The purpose of this was to help set the context, reinforce my expectations, and remind participants of the overall purpose of the study and the methodology being used. I showed some of my photographs taken during my travels by car, ferry, and air throughout the North West. Since considerable time had passed since the earlier interviews, I also shared with the participants (as co-researchers) some of the early themes and findings based on the information that they had individually provided during the earlier interviews. I put forward the preliminary core category (boundaries and boundary objects) based on my constructivist grounded theory analysis to date. Specifically, the participants were asked to keep the core concepts in mind during the search conference. The second occasion for my active participation was during Stage 1 of the search conference, "Recalling the Past and Appreciating the Present". I presented, as examples, selected child and youth health services utilization and related data: "Mapping utilization using Geographic Information Systems—The BC Ministry of Health Services PURRFECT database, and CHSPR BC Health Atlas 2 n d . Ed. (2003)." The purpose was to share child and youth health data that had direct relevance to residents of the North West. This was accomplished by using selected data for children and youth mapped at the level of the Local Health Area (excluding the Nisga'a Health Authority because they declined to participate in the study) using the process as outlined in the following section on the quantitative component. See Appendix F for the search conference detailed agenda. Quantitative Component BC Ministry of Health Services PURRFECT Database The quantitative component (nested within the qualitative component) is for the purpose of demonstrating health services utilization for children and youth residing in the North West HSDA. It incorporates generalized secondary administrative data available from the BCMOHS Population Utilization Rates and Referrals For Easy Comparative Tables (PURRFECT) 2 2 , Version 10.1 (BCMOHS, 2004). These data were mapped using GIS software ESRI Arcview 2 2 Originally, I planned to use the U B C Centre for Health Services and Policy Research linked administrative database. However, because the intent of the mapping of child and youth health services utilization data was to demonstrate efficacy as a tool only, it became apparent that the process to link the required data, including the approval processes, was going to prove too lengthy and complex for the intended purposes and timing of the study. Version 8.3, for the purpose of making complex data visually accessible to multiple (including lay) stakeholders during the search conference and to help explain what the quantitative data were demonstrating. Obtaining access to the most current version of the PURRFECT database proved complex for reasons of time, timing, and study continuity. The initial ethics approval from BREB for the study was for the qualitative component only because at that point I was unable to provide detailed information on the quantitative component. This was because a unilateral pre-determination of the detailed quantitative data requirements and analyses was felt to compromise the participatory research approach. Rather than an amendment to the qualitative component, BREB suggested a separate ethics application process later in the study, and the C & W Research Review Committee required the quantitative component to be submitted as a new study. The N H A Research Review Committtee was apprised through copies of the Certificates of Approval as they became available during the approval process, noting that background materials would be provided to them when and if required. The ethics approval process demonstrates the additional challenge of using mixed methods in approval systems more accustomed to traditional research methods. This is particularly evident in terms of timing, timelines, study design and related amendments, and multiple academic and community jurisdictions, all of which are exemplified during the multiple ethics approval processes experienced this study23. The transition from PURRFECT Version 9.0, my decision to await the latest version, the need for a separate U B C BREB ethics approval process for the quantitative component, and the subsequent approval processes by C & W Research Review Committee and the N H A Research Review Committee all contributed to the lengthy approval processes for this stage. 2 3 Had the Nisga'a Valley Health Board ultimately agreed to participate, it would have meant yet another distinct community-based research ethics approval process and the possible additional impact this may have had on the other three approval processes. 106 I decided to not acquiese to using computerized data analysis software as a tool for qualitative data analysis. While there are a number of software programs in use, such as NUD*IST, ATLAS/ t i , NVivo, and W i n M A X , there is continuing debate on the pros and cons of using computerized data analysis software (Coffey, Holbrook, & Atkinson, 1996; Robson, 2002; Spencer, Ritchie, & O'Connor, 2003; Weitzman, 2000). For example, in the context of grounded theory, Glaser (1998, p. 185) refers to these kinds of tools as "technological traps" to the extent that they could undermine or make superficial the conceptual skills required by the researcher, cut short the development of the researcher's intuitive skill, or be considered an easy way to analyze data. However, he does concede that, over time, this technology will likely become more appropriate to grounded theory analysis. Others also comment specifically in the context of grounded theory method. Charmaz (2000), for example, acknowledges that such programs are very helpful in dealing with voluminous data; however, her reservations include the observation that they fit more with objectivist, as opposed to constructivist, grounded theory, and that they may inadvertently reduce interpretive work to mere automated procedures. Again with respect to grounded theory, Robson (2002) and Coffey, Holbrook, & Atkinson (1996) caution that computerized analysis could inadvertently encourage, even impose upon, the researcher to embrace a particular approach for analysis. The literature is clear that while there is a place for computer-assisted data analysis software tools, they cannot replace the researcher's critical role in thinking and data analysis (Charmaz, 2000; Spencer, Ritchie, & O'Connor, 2003; Weitzman, 2000). A further delimitation exists in my use of the PURRFECT database, the use of selected utilization data, and the use of selected ways to map the data. In other words, while the qualitative data provided suggestions as to where to focus (for example, teenage pregnancy rates and mental health in particular), I did not systematically review the qualitative data and list all of the possible quantitative data to be sought out. If the purpose of this study had been to 107 specifically identify and quantify health service needs, this would have been necessary; however, the focus of the study was to explore the process to determine needs from multiple stakeholder perspectives. Moreover, the quantitative component at the outset was intended to be a minor component with the express purpose to demonstrate the utility of mapping and visually representing selected utilization data suggested by, and relevant to, local contexts in the North West. This was adequately served with the maps presented during the search conference method. This completes the first leg of this technical journey, which detailed the research methodology used in this study. The next leg discusses data analysis, again with the dominant focus on qualitative methods. This journey also takes us into the grounded theory method, with an emphasis on constructivist grounded theory, which I used in this study. It also discusses a number of technical steps in the gathering, transcription, and coding of data, and related processes. Finally, I review several qualitative authenticity criteria in order to verify that the approach and methods employed in this study are trustworthy and, in turn, to ensure confidence in the findings. D a t a A n a l y s i s Qualitative Component Qualitative research is inductive, with insights and concepts arising from the data. This is in contrast with deductive research, in which preconceived hypotheses and theories are tested by the data (Creswell, 2003; Taylor & Bogdan, 1998). There are a number of characteristics of qualitative research that specifically relate to data analysis (Snape & Spencer, 2003): (a) data collection process is interactive and developmental; (b) data is detailed, information rich, and extensive; and, (c) data analysis is open to emergent concepts and ideas. Analysis of qualitative data, in its broadest sense, is a recursive exercise involving sense-making, interpretation, and theorizing (Schwandt, 2001). 108 Qualitative research does not subscribe to a single methodology, nor does it infer a particular method, practice, theory, or paradigm (Denzin & Lincoln, 2000). There is no single way to conduct qualitative research (Snape & Spencer, 2003), nor is there a single way to perform qualitative data analysis (Schwandt, 2001). The following two sections will first address a general grounded theory approach and then, specific to this study, introduce a constructivist grounded theory approach which was used as the basis for data gathering and analyses in this study. Grounded Theory Approach The term approach is significant in the context of grounded theory for a number of reasons. Grounded theory is but one option amongst many (Annells, 1996). However, "[t]he grounded theory approach is the most influential paradigm for qualitative research in the social sciences today" (Denzin, 1997, cited in Patton, 2002 , p. 124). Glaser & Strauss (1967, pp. 8-9), in their original text on grounded theory, intended to "stimulate other theorists to codify and publish their own [emphasis in original] methods for generating theory....keepfing] the discussion open-minded, to stimulate rather than freeze thinking about the topic." Unfortunately, this stimulation has lead to dissension and divisiveness in the field, with two methodological schools arising, Straussian and Glaserian, bearing the names of their founders. This debate, often acerbic and confrontational, has been reviewed extensively in the literature over a number of years and will not be repeated here. See, for example, Babchuck (1996), Bryant (2002), Charmaz (2000), Dey (1999), Glaser (1992), Locke (1996), Melia (1996), Robson (2002), and Urquhart (2001). This debate underscores that "[t]here is no orthodoxy in grounded theory...nor [is it] necessary or desirable that such an orthodoxy should develop" (Turner, 1983, p. 347). This builds on Glaser's own intent, for example, in his text on theoretical sensitivity (Glaser, 1978), written as a supplement to the text he originally co-authored: 109 This book is not doctrine...Yes, the book presents an orthodox or basic outline of a grounded theory research project. But in doing so the author hopes to stimulate thought about the methodological issues involved and the variations in the variables used to describe the generating of grounded theory as a research process....trusting] that readers can see other possibilities for ordering a grounded theory research, (p. ix) Again, when addressing the future of grounded theory, Glaser (1999, p. 837) states that "[gjrounded theory is used in part or in whole by researchers. When used in part, it is 'adopt and adapt,' with other research methods woven in, based on the training and judgment of the researcher involved." Moreover, Strauss & Corbin (1998, p. 12) observe "creativity of researchers also is an essential ingredient." And, that "[grounded theory] procedures were designed not to be followed dogmatically but rather to be used creatively and flexibly by researchers as they deem appropriate." Earlier, they observed the evolution of guidelines and procedures through user experience, resulting in enhanced effectiveness and increased ingenuity (Strauss & Corbin, 1994). More recently, Charmaz (2003, p. 108) concludes, "grounded theory methods assumes an open, flexible approach. Hence you shape your methodological strategies while engaged in your research rather than having them planned before beginning the data collection." And, further, that grounded theory methods can be used "as flexible, heuristic strategies rather than as formulaic procedures" (Charmaz, 2000, p. 510). This counsel is supported by the opinions of others, for example, Bryant (2002) about the "re-grounding" of grounded theory, and Dey (1999) about the "evolution" of grounded theory. However, as Bartlett & Payne (1997, p. 182) suggest, "[fjhe legitimacy of adopting only parts of the grounded theory method.. .must ultimately rest upon the justifications put forward by individual researchers." 110 Evolving since 1967, the basic tenets of grounded theory have remained fairly consistent, yet subject to a number of scholarly viewpoints in the literature (Annells, 1996; Bartlett & Payne, 1997; Bryant, 2002, 2003; Charmaz, 1995, 2000, 2001a, 2001b, 2003, 2004; Creswell, 1998; Dey, 1999; Dick, 2002; Glaser, 1978, 1992, 1998, 1999, 2002a, 2002b; Glaser & Strauss, 1967; Locke, 1996; Melia, 1996; Robson, 2002; Strauss & Corbin, 1990, 1994, 1998; Urquhart, 2001). Building on the foundation laid out by Glaser & Strauss (1967), Charmaz defines grounded theory as "an inductive methodology that provides systematic guidelines for gathering, synthesizing, analyzing, and conceptualizing qualitative data for the purpose of theory construction." (Charmaz, 2001, p. 6396). While there is considerable flexibility, the central features of grounded theory are captured by Charmaz (1995) as: (a) simultaneous phases of data collection, coding, and analysis; (b) coding from the data, not from preconceived hypotheses; c) memo-writing, occurring between coding and writing the first draft; (d) theoretical sampling to refine emerging conceptual categories; and, (e) intentionally delaying the literature review to increase novelty. However, grounded theory arose from the perspective of positivism (Charmaz, 2000). Positivism is a term coined by August Comte (1798 - 1857). It is a philosophical orientation, or worldview, that: (a) addresses a single reality; (b) uses deductive logic; (c) treats the knower and known as independent; (d) believes in empiricism; (e) treats inquiry as value-free; and, (f) customarily uses quantitative methods (Lincoln & Guba, 2000; Schwandt, 2001; Tashakkori & Teddlie, 1998). In contrast, constructivism denotes multiple realities or interpretations. Meanings are constructed when human beings engage with reality, based on historical and social perspectives; the knower and known are inseparable, and inquiry is value-laden (Creswell, 2003; Robson, 2002; Schwandt, 2001; Tashakkori & Teddlie, 1998; Veenstra, 1999). Constructivism and 111 grounded theory are now enjoined as constructivist grounded theory, which is discussed in the next section. Constructivist Grounded Theory Method Constructivist grounded theory is advanced by Charmaz (2000) to argue in favour of the need to study people in their natural settings and to redirect qualitative research. In so doing, she downplays rigid or prescriptive grounded theory strategies, argues for a focus on meaning through interpretive understanding, and supports using grounded theory without a proclivity to its earlier positivist roots. This shift in focus is supported and detailed by Clarke (2005). Glaser (2002a) has acknowledged a growing and scholarly constructivist orientation to grounded theory. However, in a rejoinder, he characterizes this variation as being misplaced, downplays its significance, and challenges its relevance. On the other hand, this retort runs counter to his earlier welcoming of variation and new possibilities. Bryant (2003) counters Glaser's repudiation of constructivist grounded theory with a charge of proprietorship, observing that grounded theory now enjoys additional views beyond that espoused by Glaser. Despite these and related debates on the evolution of grounded theory, I chose to use a constructivist grounded theory method for the qualitative data gathering and analyses processes in my study. My reasons for doing so include the fit of constructivist grounded theory with my personal philosophical views outlined in Chapter One. I turn now to some technical processes in terms of data transcribing, coding, comparing, and analyses. Transcribing the Data A l l 43 semi-structured interviews, four focus groups, and the search conference comprising 17 participants were audio-taped. Through my thesis expense funds, I purchased transcription services. I reviewed confidentiality expectations with my transcriber based on BREB criteria. These initial services proved disadvantageous following spot-checks in which I 112 compared several early interview tapes with the hard-copy transcription in hand. Subsequently, we amicably agreed to terminate these services. I was assured that all electronic versions of the transcription would be deleted, and I filed all of the hard copies of the transcripts in question, awaiting re-transcription. I then recruited another transcriber who was recommended by a colleague, and came highly qualified. Again, 1 reviewed confidentiality expectations with her and, additionally, shared a copy of literature on "Improving accuracy of transcripts in qualitative research" (MacLean, Meyer, & Estable, 2004). A l l earlier tapes were reviewed and re-transcribed as necessary. Again, I spot-checked a number of initial tapes with transcription in hand and was entirely satisfied with the quality of transcription. Tapes were provided to the transcriber in batches following fieldtrips to conduct data gathering. Upon completion of transcription, approximately 1300 pages of qualitative data had been created, the majority representing the semi-structured interviews. One of the challenges with this process was dealing with significant time lags between data gathering, receipt of the transcribed data, and my ability to schedule time for data analysis in an ongoing fashion. Consequently, there was often a span of several months between the time of data gathering and analysis of the transcribed data. Care was taken during transcription to not include any reference to names and locations that could ultimately lead to the identification of study participants. Additionally, I meticulously reviewed all transcripts and blacked-out any reference to potentially identifiable names and locations. These pages were then photocopied and given to the transcriptionist who revisited these portions of transcription and deleted any possible identifiers on a back-up compact disc (CD). During this stage of transcript review, I also flagged any transcription that indicated spots of unintelligible audiotape recordings. These were re-assessed if this portion of the transcript 113 contained any data relevant to open coding. In keeping with a constructivist grounded theory approach, the data gathering, transcription, coding, and analysis largely proceeded concurrently. Coding Process Open coding. In contrast to a pre-conceived system of coding, typical of quantitative studies and some qualitative studies, coding in constructivist grounded theory entails "defining what the data are all about....creating [emphasis in original] the codes as you study your data. The codes emerge as you study your data" (Charmaz, 1995, p. 37). The initial process involves a number of features as described by Charmaz (1995, 2000, 2001a, 2001b, 2003, 2004), which I draw on extensively. While this process is presented in a linear fashion for ease of understanding, it is very much an iterative and comparative process. I began the cycle of analysis with open coding, also known as line-by-line coding. I carefully examined each line of data and the actions or events occurring or represented were defined in short, active, and specific terms. The coding was done using active terms, that is, gerunds (verbs ending in ing) to give insight into what is happening. The purpose is to scrutinize and continuously interact with the data in order to define meanings. This type of coding keeps the researcher attuned to the realities of the subjects, and does not simply assume that these realities are shared by the researcher. Through this process, the most frequently occurring codes were identified, generating several initial categories at this stage of analysis. During the initial open coding process, I started out by coding Question One across the first set of interviews, rather than coding each interview in sequence. However, I felt that I lost continuity and flow by subject and I didn't really get immersed in the data. Plus, several of the meaningful codes re-appeared during different questions in the same interview for which I would lose continuity by coding-by-question across the interviews. Therefore, I shifted to coding-by-interview, but not necessarily following the order in which the interviews were conducted. After 114 completing line-by-line coding of 10 interviews (out of 26 completed interviews and 20 transcribed up to this point), and in view of the now repetitive nature of much of the coding, I felt it was an appropriate time to embark on theoretical coding. Of these, two were from the public stakeholder group, three from the managerial group, three from the clinical group, and two from the policy group; thus achieving a reasonable balance of data. Axial coding. Charmaz (1995, 2000, 2001a, 2001b, 2003) suggests a two-stage coding process—open-coding followed by focused coding—and chooses to not use axial coding (Charmaz, 2004). This practice is also followed by Dick (2002). Strauss and Corbin state that the purpose of axial coding is "to begin the process of reassembling data that were fractured during open coding" (1998, p. 124), and "to systematically develop and relate categories [concepts]" (1998, p. 142). However, Glaser (1992, p. 61), in his forceful rebuttal to the first edition of Basics of Qualitative Research (Strauss & Corbin, 1990), decries Strauss's lack of scholarship in his entire book, using as a poignant example the use of axial coding in grounded theory analysis to the alleged exclusion of theoretical coding. Dey (1999, p. 112) suggests that "the distinction between open, axiel [sic], and selective coding is a hallmark of grounded theory." On the other hand, the basic premises and intent of axial coding and theoretical coding appear similar (that is, to connect substantive codes derived through open coding). This may be a reason for the variability in coding methods, or the apparent omission of this coding stage, by various grounded theorists. For the purposes of this study, I elected to not use axial coding preferring, instead, to follow Charmaz's lead in proceeding from open (substantive) coding to selective (focused) coding. However, I did this using the concept of theoretical coding in order to connect the key concepts (categories) emerging during the open coding stage. 115 Theoretical coding. "[TJheoretical codes conceptualize how the substantive codes may relate to each other as hypotheses to be integrated toward a theory. They, like substantive codes, are emergent; they weave the fractured story back together again" (Glaser, 1978, p. 72). Theoretical coding is about creating "conceptual connectors" (Glaser, 1992, p. 38) which "emerge in coding as ways of relating the substantive codes together when integrating the theory" (Glaser, 1998, p. 137). However, while Glaser (1978, 1992, 1998) consistently denounces the tendency to force data into preconceived categories, he somewhat antithetically suggests using "coding families" to assist in developing theory (Glaser, 1978, p. 73; 1992, p. 46; 1998, p. 137). Nonetheless, connecting the substantive codes toward integrating a theory is fundamental to the constant comparative method. It makes little sense to proceed in the absence of such linkages. This step, like the others, required a lot of time to find, reflect upon, and compare the substantive codes, which, in the case of this study, I performed across hundreds of pages of transcription. Colour-coding, and cutting and pasting assisted me in this process. Next in the coding process is selective (focused) coding which establishes the emergent core category. Selective coding and constant comparative method. Charmaz (1995, 2000, 2001a, 2003, 2004) describes selective (also known as focused) coding as the use of initial codes that appear frequently to sort and synthesize large amounts of data. These codes are more conceptual and directed than those derived through the open coding process. The selective coding process leads to the emergence of a core category that becomes the main theme, or story-line, of the research. This results from consciously looking "for the 'main theme'.. .the main concern or problem for the people in the setting, for what sums up in a pattern of behavior the substance of what is going on in the data, for what is the essence of relevance reflected in the data" (Glaser, 1978, p. 94). 116 At this stage, I delimited open coding to coding only those variables that related to the core category (Glaser, 1978; 1992). "The core variable [category] becomes a guide to further data collection and theoretical sampling....analysis is guided by the core variable [category]" (Glaser, 1978, p. 61). The core category emerges through the process of constant comparisons and data analysis (Glaser, 1992). The constant comparative method is a process that compares data, incidents, contexts, and concepts (Charmaz, 2003, p. 101). Through constant comparisons, I delimited the data and ensured saturation of the emergent categories, thus allowing me to focus on the data that were directly relevant to those categories (Glaser & Strauss, 1967). The criteria that I used to determine the core category are summarized by Strauss & Corbin (1998): (a) is central—relating to many categories; (b) appears frequently—indicating a central concept; (c) logically and consistently relates to the categories—-the data are not forced; (d) is abstract—can be used generally; (e) can be further refined—contributes to a theory's depth and explanation; and, (f) explains the entire set of data. In this study, I identified not just one, but two core categories that emerged from the data. This is acknowledged to occur infrequently. Then, the other categories were related to them (Glaser, 1978; Strauss & Corbin, 1998). Theoretical Sampling and Theoretical Saturation The concepts of theoretical saturation and theoretical sampling are closely related— "theoretical sampling yields collection of data to the saturation of categories and their properties" (Glaser, 1998, p. 157). Theoretical sampling is "the process of data collection for generating theory whereby the analyst jointly collects, codes, and analyzes his [sic] data and decides what data to collect next and where to find them, in order to develop his [sic] theory as it emerges." (Glaser, 1978, p. 36; Glaser, 1992, p. 101; Glaser & Strauss, 1967, p. 45). Further, "[this process] keeps data collection to a minimum, instead of allowing it to pile up too much data. It responds 117 to the need for more data that are relevant for the emergence of new categories and properties" (Glaser, 1998, p. 157). Theoretical saturation is "when...no new properties emerge and the same properties continually emerge as one goes through the full extent of the data" (Glaser, 1978, p. 53). Dey (1999, p. 8) clarifies that this "refers to concepts, not data, and identifies a point where no further conceptualization of the data is required." Strauss & Corbin (1998) describe theoretical saturation as the point when no new data is emerging, the categories are well developed, and the relationships between the categories are solidly established. In this study, I found that these concepts are, in fact, very closely related. I was not able to strictly follow the notion of theoretical saturation due in large part to how I designed the study and several challenging geographic, organizational logistics, and travel-related factors. I conducted sampling in the context of a knowledge translation approach in which I sampled from four stakeholder groups and wanted to ensure inclusion of all the LHAs in the North West (with the exception of the Nisga'a Health Authority as discussed earlier). Nominally, this meant one participant from each of the four stakeholder groups (public, managerial, clinical, and policy-maker) for each L H A , plus sampling from the N H A corporate office, BCMOHS, B C M C F D , a children's tertiary centre in Vancouver, and others. The distance and availabilities of most of these participants were major factors in lead time and travel logistics for the interviews, focus groups, and the search conference. Getting the tapes transcribed early and quickly and then coded and compared in a timely fashion proved onerous. These factors worked against the concept of a small set of interviews followed by early data analysis in order to determine the need for further targeted sampling to build upon the early findings. For this reason, I rarely sought out participants solely on the basis of needing to saturate the sampling or the concepts arising from the data. My experience shows that where this makes sense in theory, it is extremely 118 difficult in practice. I used a CBPR approach conducted in the field hundreds of kilometers away and in an exceptionally large and rugged rural and remote environment with very busy people. However, the relatively large and heterogeneous sample size in this study satisfied the saturation requirement well before the study was completed. Moreover, I used a unique triangulation of qualitative methods - semi-structured interviews, focus groups, and a search conference. As well as building up trust between myself as researcher, and the participants, trust was engendered among the participants themselves particularly during the progressive data-gathering group sessions—small focus groups followed by the large two-day search conference. As the individual semi-structured interviews progressed during the parallel course of data analysis, I was able to refine the prompts and probes during the course of the interviews and gain targeted data. This process did not, as Glaser (1998) suggests, minimize data collection because of my commitment to continue the process in a way that honored the CBPR approach and expectations garnered during the course of the study. This process, in fact, did achieve the same ends of theoretical sampling and saturation; however, it undoubtedly resulted in far more data gathering than would have been necessary had I taken a more prescriptive grounded theory approach. Memo Writing During the course of this study, I hand-wrote over 100 theoretical and operational memos in various places during my extensive travels in the North West. These served to chronicle my evolving thought process and provided an ease of reference during the write-up stage. I sketched many diagrams as a means to make sense of the data and in an attempt to draw what words could not explain very well during the formative stages of the core categories and the emerging theory. Writing theoretical memos is variously described, as "[t]he core stage [emphasis in original] in the process of generating theory, the bedrock of theory generation" Glaser (1978. p. 83); "the crucial intermediate step that moves the analysis forward (Charmaz, 2001a, p. 687); and, "the 119 pivotal intermediate stage between coding data and drafting the theoretical analysis" (Charmaz, 2001b, p. 6398). The purpose of memo writing is to: "provide the content behind the categories" (Glaser & Strauss, 1967, p. 113); "kee[p] the research grounded" (Strauss & Corbin, 1998, p. 218); and, "hel[p] the researcher to spark fresh ideas, create concepts, and find novel relationships" (Charmaz, 2001a, p. 687). An additional distinction is made by Charmaz (2001b)—that constructivist grounded theorists incorporate their own assumptions and meanings, besides those of the research subjects. I have used a constructivist grounded theory method; thus, I have been reflective and incorporated my own perspective into the memo writing stage. Trustworthiness Some scholars use the term, trustworthiness, in qualitative research. This refers to the trust or confidence one has in a study and its findings (Robson, 2002). Trustworthiness, introduced by Lincoln & Guba (1985), includes four criteria: (a) credibility, (b) transferability, (c) dependability, and (d) confirmability. Credibility (roughly equivalent to internal validity) concerns assurances that the subjects' views fit with that of the researcher's reconstruction and representation. This is often achieved through triangulation - "checking the integrity of the inferences one draws" (Schwandt, 2001, p. 257). It strengthens a study by combining methods . (Patton, 2002), which can include employing a number of qualitative methods, or combining (mixing) qualitative and quantitative methods. Robson (2002, p. 553) expands this to include the use of "more than one perspective, theory, participant, method, or analysis." Transferability (roughly equivalent to external validity) deals with the extent to which findings are generalizable and allow for case-to-case transfer. Dependability (roughly equivalent to reliability) ensures that the process is logical, traceable, and documented. Confirmability (roughly equivalent to 120 objectivity) establishes that the data and findings are readily discernible and not merely contrived by the researcher. As Schwandt (2001, p. 259) discerns, Guba & Lincoln (1989) re-evaluated their initial set of criteria in Fourth Generation Evaluation. He explains that the trustworthiness criteria "were parallel, quasi-foundational, and clearly intended to be analogs to conventional criteria....[and] were principally methodological criteria and thereby largely ignored aspects of the inquiry concerned with the quality of the outcome, product, and negotiation." Thus, Guba & Lincoln (1989) proposed another set of criteria, called authenticity criteria, which was better aligned with a constructivist epistemology. These are described in detail in the next section, which includes examples of how I met these criteria in this study. Qualitative Authenticity Criteria The term "authenticity criteria" reflects the "hallmarks of authentic, trustworthy, rigorous, or 'valid' constructivist or phenomenological inquiry" (Lincoln & Guba, 2000, p. 180). Given the approach I used, these criteria realistically reflect the characteristics of this study. These criteria include: (a) fairness, (b) ontological authenticity, (c) educative authenticity, (d) catalytic authenticity, and (e) tactical authenticity. Fairness refers to the extent to which the subjects' concerns, issues, and values are solicited and represented in a balanced, even-handed way by the researcher. Ontological authenticity is concerned with the extent to which the subjects' own constructions are enhanced, informed and made more sophisticated through participation in the study. Educative authenticity is about the extent to which subjects develop a greater understanding and appreciation of the constructions of others. Catalytic authenticity refers to the extent to which action is stimulated and facilitated by the research process. Tactical authenticity is concerned with the extent to which subjects are empowered to act. 121 Fairness Fairness was sought in a number of ways. First, while purposive sampling is not representational sampling, it is important to achieve a sense of balanced input from throughout the North West HSDA, respecting the local concerns, issues, and values brought to the study. This points to the importance of including a sizeable proportion of Aboriginal representation to more closely reflect their perspectives, noting again that Aboriginal peoples are not an homogeneous entity, with some 25 bands located throughout the entire North West region. Second, it was important to achieve a sense of balanced input from the four main stakeholder groups—public, managerial, clinical, and policy—since no one perspective could provide a balanced view. The sample size for a grounded theory study can be quite small, say, a dozen or so subjects. However, early on I aimed for approximately 40 participants to balance the perspectives from subjects living in the North West, and to include views from the N H A corporate offices, the main tertiary service provider, the provincial government through the BCMOHS, B C M C F D , and the BC Provincial Government Social Policy Integration Team, and the federal government through the FNIHB. This furthered the study's purpose to explore issues from both a community-based and a systems approach, acknowledging and respecting the very different perspectives that these two different lenses bring. Third, the sequence of three qualitative data gathering methods generated data from individual, small group, and large group settings. This created a growing sense of ownership of the process and findings through continued active participation and a sharing of the data as the group moved through these settings. That I invited the participants to be "co-researchers" to the focus groups and search conference added a dimension of soliciting and representing participants' viewpoints on a more equal footing throughout the entire research process. 122 Finally, I analyzed data using a constructivist grounded theory approach, which "sensitizes [the researcher] to multiple realities and the multiple viewpoints within them; it does not represent a quest to capture a single reality" (Charmaz, 2000, p. 523). Ontological Authenticity Ontological authenticity was more difficult to achieve; however, the sequence of qualitative methods used in the study served to broaden participants' perspectives and understanding of the issues. I shared my preliminary findings from the semi-structured interviews with each focus group, and these formed a basis for the questions addressed during the session, building on the individual interview responses as a small group. Again, I shared my preliminary findings at the search conference, further building and expanding upon the interview and focus group data. Thus, there was a certain shared familiarity of the issues amongst the study participants and by the time of the search conference a sense of group cohesiveness incrementally created through earlier interaction had become evident. This on-going participation facilitated the construction and growing sophistication of a co-created, shared reality amongst the group, and between the study participants and myself as researcher. When the volunteer action teams met late on the second day of the search conference, there was palpable and sustained energy in the room in terms of taking responsibility for follow-up on the ideas, strategies, goals, and priorities collectively set by the group participants. In keeping with the principles of a search conference, there was no hesitation for a public commitment to sustainable action, which transpired at three levels as determined by the group -systems, North West HSDA, and local community. Educative Authenticity Educative authenticity, like ontological authenticity, was achieved by incrementally progressing through the focus groups and search conference, providing a real-time opportunity to 123 build upon and share individual perspectives. While arranging the focus groups, I specifically raised awareness that participants, as co-researchers, should comment, reflect, and add to each others' thoughts and perspectives that would arise during the meeting, cautioning that they would be conversing mainly with each other, not with me as the researcher. Moreover, in my introduction at the focus group sessions I typically reviewed a number of ground rules that served to reinforce these expectations. These included: (a) the need for confidentiality and protection of privacy outside the focus group session; (b) that the session was intended to be conversational and interactive among the participants, not with me as researcher, and that my role was to guide the content and facilitate the process; (c) that there were no right or wrong answers; (d) that it was not about what they thought I wanted to hear or the group wants to hear, but that different views are important and that they could ask each other questions; (e) that this was an opportunity to express their thoughts, feelings, perceptions, and experiences at a deeper, personal level; (f) that they should reflect and comment on each others' comments; (g) that they were co-researchers, as part of a participatory action research approach; and, (h) that they should respect each other by trying not to interrupt or talk over each other. During the search conference, participants engaged with each other through a mix of small heterogeneous groups (which were reconfigured for each small group session) and plenary sessions. This helped to increase their understanding and appreciation of each other. Catalytic Authenticity Catalytic authenticity is best exemplified by the early action emanating during and resulting from the search conference. The goals of the search conference included the co-creation of action ideas and strategies and the co-creation of action teams to follow-up on, and be responsible for, prioritized ideas, strategies, and goals which were identified during the search conference. A number of priorities were identified with group consensus that the overarching 124 priority was engendering collaboration, integration, and co-ordination in community service planning. Through small and plenary groups the action ideas and strategies were reworked. Action teams were created to take responsibility for moving forward the prioritized strategies and goals. The plenary group ultimately decided to take action at three distinct levels: the overall system, the North West HSDA, and the local community. Action points were shared and committed to publicly by each group in the plenary report-back session. Included, for example, was a commitment to organize a regional symposium of key stakeholders in the North West to address community collaboration and how to go about integrated service delivery. This group, comprising a broad range of study participants from a number of rural and remote communities has been meeting formally and regularly via teleconference since the search conference. They held a very successful symposium in Terrace in November, 2005 with over 70 participants spanning a broad spectrum of disciplines and sectors. They have also sought my ongoing participation, but they take responsibility for the process. This was a direct action stimulated and facilitated by, and emanating from, the search conference with a stated purpose to move from talk to action. Fairness and authenticity were further demonstrated during the findings sessions that I held in Prince Rupert, Smithers, Terrace, Prince George, and Victoria in March and April, 2006. In total, 17 study participants were able to attend these sessions. I shared my findings to date and sought feedback. These sessions were audiotaped, transcribed, and reviewed. This time with the study participants provided an excellent opportunity to reconnect, collectively share thoughts, and shape the findings in small group settings that ranged from one to eight participants. I was encouraged and gratified to hear first-hand how the participants felt about and reacted to the findings. Some of their reflections are captured below: [H]ave you got the issues? You bet you do! I mean, have you got a grasp of understanding, what's going on in this region they call the North, yeah, I think you do. Right on! I think you see that this region is huge. I think that you see the disparities in the region. I think you see the thrust of what's wanting to be government sort of pushed, as opposed to community needing to hold onto. You've got it. You've got the heart of the region there. (Policy-maker, Findings Session) [0]verall, I think it's good. And, what I do like is the idea of the.. .Venn diagrams and the capturing there. That is the essence of it. (Clinician, Findings Session) Actually never thought about it in these terms and that's why I said to you a long time ago that what you're doing is very special. Because, as far as I can see, what you've captured here is a kind of progressive model.. ..I think the whole idea is being presented by what you're doing.. .to the world of this health area it is new. (Manager, Findings Session) So, for me in my community, I can see a lot of benefit in having been part of your research, to have this information to take back there. And, once in my community, wearing the different hats that I wear... .This is an excellent model for us to be working in. (Parent, Findings Session) While there was no disagreement with the findings in general, several significant points were raised which served to clarify my articulation of the findings, the Venn diagrams, and the conceptual framework. I incorporated these into several sections during the write-up stage. Tactical Authenticity Tactical authenticity is partially exemplified in the foregoing account of catalytic authenticity. Additionally, empowering study participants was made possible by, and enabled through the events leading up to, the search conference. The search conference was an "aren[a] for dialogue", one during which it was possible to "tap participants' energy for identifying and solving their own problems.. ..The outcome of a successful search conference is a set of action 126 issues and plans that participants want [emphasis added] to pursue collectively" (Greenwood & Levin, 1998, p. 156). During the concluding plenary session of the search conference, many action ideas were raised and shared. Among these was a commitment to plan a symposium of key stakeholders in the North to address community collaboration and how to undertake integrated service delivery. Shortly after, a planning group emerged and met via teleconference on a regular basis to plan and hold a forum on integrated services for children, youth, and families, which took place in Terrace, BC on November 3, 2005. This proved to be highly successful. Consequently, a number of on-going actions continue to develop as a direct result of this forum, including: (a) development of a listserv as a tool for on-going communication with participants, (b) creation of a website, (c) planning for an asset mapping/social network analysis initiative as a tool to identify and assess assets and the strength of these relationships in the North West as a component of definitive planning for integrated services, (d) participation in professional health human resources planning through participation in co-operative student programs such as those at the University of Northern B C , (e) a commitment to broaden participation in this initiative, and, (f) planning for a second forum to be held in the Fall, 2006 to expand upon and continue these and other initiatives. In terms of other areas, a number of initiatives are underway in which the foregoing has a very real potential for impact. These include, for example, (a) strong linkages with Child Health B C , a province-wide, inter^organizational child and youth health services delivery network; (b) a number of research networks developed with funding by the Michael Smith Health Research Foundation, such as Child and Youth, Rural and Remote, and Aboriginal; and, (c) the C Y H N C , as discussed earlier. 127 Grounded Theory Criteria In terms of grounded theory criteria, Glaser (1998) proposes trust, and describes four criteria: (a) fit, (b) relevance, (c) work, and (d) modifiability. Fit, which Glaser compares to validity, refers to whether the concept represents the purported pattern in the data. Relevance speaks to how well the study reflects and impacts the issues that are important to the subjects. Work refers to how well the concepts and theoretical coding relate to the main concerns of the subjects. Modifiability uses the constant comparative method to ensure that data are not forced and that emergent theory is modifiable. Quantitative Validity and Reliability Criteria In this study, the quantitative component is less critical because it played such a relatively minor role. It was simply a tool to demonstrate the utility of visualizing utilization data through the use of maps. Nonetheless, two issues—validity and reliability— concerning quantitative methods must be acknowledged. Validity concerns the extent to which findings are accurate and legitimized (Schwandt, 2001). There are two aspects of validity, internal and external. Internal validity is concerned with the ability to correctly draw inferences from the data; whereas, external validity is concerned with the ability to draw inferences which are generalizeable to other situations (Creswell, 2003). Reliability, or the ability to replicate the results by another researcher (Schwandt, 2001), is another characteristic of quantitative methods. In terms of both validity and reliability, this study relies extensively on the integrity of the Ministry of Health Services' PURRFECT database and the utility of the ESRI Arc View v. 8.3 GIS software. To the extent that these two sources are valid and reliable, the process I used to map specific utilization data and demonstrate the utility of using maps to make complex data visual is valid and reliable. The risk to this study of inaccuracy and unreliability is small given the minor role that this tool played in the study. This limited use of quantitative data in a mixed 128 methods inquiry represents a significant delimitation in the quantitative component of the study by narrowing its scope (Creswell, 1998). On the other hand, it served a useful purpose in the context of the search conference. This may point to a limitation of the study in terms of a potential weakness (Creswell, 1998) accentuated through my selective use of quantitative data. Auditabilitv Finally, I would like to raise the issue of auditability as yet another criterion of trustworthiness and authenticity. Lincoln & Guba (1985, pp. 318-319) promote the audit trail as an important way to ensure confirmability of research findings. White, Woodfield, & Ritchie (2003, p. 320) describe the audit trail as "the extent to which others can follow the research process that took place and any concerns or observed limitations about its conduct." This includes: (a) ability to follow the research design; (b) how fieldwork is conducted; (c) sample design, selection, composition, and limitations; (d) methods used in data analysis; and, (e) the researcher's epistemological approach (White, Woodfield, & Ritchie, 2003). Throughout the course of this study, I have maintained meticulous written records for each stage of the research process, which provides an opportunity for anyone to closely follow, and duplicate if necessary, each step of the study. Q u a n t i t a t i v e C o m p o n e n t Using the PURRFECT Database and GIS to Map Child and Youth Health Service Utilization in the North West HSDA I used GIS software, ESRI Arcview Version 8.3 to create approximately 12 maps in preparation for the search conference, at which I presented and discussed them. These maps specifically highlight two major issues (among others) facing the North West HSDA and repeatedly raised during the qualitative phase of the study. These issues were teenage pregnancy 129 rates and child and youth mental health, both of which remain unaddressed in a systematic way in the North West. The maps typically used data from the most recent year available (2003/04) for information such as: population 0-19 years by L H A in the North West; mental health total cases 0-19 years treated by L H A over a three-year period; mental health inpatient cases 0-19 years treated in each L H A ; an estimate of mental health cases 0-19 years not served by the formal health system; pregnancy cases 0-19 years referred to a tertiary hospital by L H A ; and, pregnancy cases 0-19 years handled by L H A of residence. I also included examples from the 2 n d Edition of the BC Health Atlas 2 4 to demonstrate the greater sophistication and utility that can be gained with additional resources. This exercise was not intended to be comprehensive; rather, these examples served to demonstrate the utility of GIS in making visual complex health services utilization data, especially with lay audiences. Their intended visual simplicity belied the time and energy that went into their production. This included, for example, the separate ethics approval process for this quantitative component, awaiting and securing the latest version of PURRFECT v.10, learning about the database, outputting the data using an Excel spreadsheet, and learning the GIS software to produce these fairly basic maps. Fortunately, I was able to secure technical assistance from a decision-support staff member at C & W who had working familiarity with the PURRFECT database, and also from a geographer25 who had considerable GIS mapping experience in health. Nonetheless, I experienced a steep learning curve under extremely tight time constraints given the scheduled search conference timeline and the Ministry's delays in releasing the database. The use of GIS as a mapping tool assisted me as a researcher and the study participants as co-researchers in getting a more complete picture of child and youth health services utilization in 2 4 Available at http://www.health-atlas.chspr.ubc.ca 2 5 Sadly, this young man, Peter Schaub, died suddenly in August, 2005 while unloading his belongings during a move to Penn State University to pursue graduate studies in geography. I am deeply indebted to Peter's knowledge, his teaching ability, and his cheerful manner. Like so many of his colleagues, I miss him. 130 the communities of relevance and interest to the participants. Because the Nisga'a Valley Health Board chose to not participate in the study, the quantitative component excluded their data in the maps, although it was available through the PURRFECT database. Of the nine available applications available on PURRFECT v. 10.1, seven were accessed or used, including: Local/Regional Referral Analysis (ADTSPEC); Age-Standardized Utilization Rates (ASUR); Hospital Comparative Reports (HOSPCOMP); MSP Referrals (MSPREF); Population Query System (PEOPLE); Summary Referral Patterns (REFERRAL); and, Vital Statistics Summary (VSTAT). Two applications were not used because they were not relevant to this study: Continuing Care Age-Standardized Utilization Rates (CCASUR); and, Utilization Rates by Health Program and Year (URPHY). Use of the PURRFECT database, however, was not without additional ethical considerations. While all data were summarized, anonymized, and contained no patient-specific identification, I had lingering concerns about anonymity and confidentiality in very small communities in the study site. For example, because the PURRFECT database allowed data analysis at the L H A level (in addition to the HSDA and H A levels), it was possible in a rural or remote L H A with very low population to identify a specific diagnostic or procedural code and associate it with one or two cases which, in a very small community, could easily lead to identification of the child or youth. However, the BCMOHS had dealt with this issue in the past with the recognition that in small communities this would likely already be known. Further, the data is essentially public, free, and available to anyone who wants to access it via the Internet (provided the user registers on-line). Thus, at the outset this was felt to be of minimal risk in the context of this study. However, late in the study, the BCMOHS, Knowledge Management and Technology Division, did ultimately acknowledge potential anonymity problems with small numbers of cases in small communities and gave approval on the condition that maps use the 131 symbol " <5 cases" rather than specify the absolute number of cases when less than 5 per L H A (e.g., for teenage pregnancy cases). In keeping with this potential problem of confidentiality, I ultimately decided to not include these maps in this thesis, electing to include only two maps as examples of how GIS could be used as a tool (see Appendices G l and G2). Issues Related to the Analysis of Aggregated and Mapped Data Two common geographical problems encountered in the analysis of aggregated and mapped data are the ecological fallacy and the modifiable areal unit problem (MAUP). Had this study centred on quantitative health services utilization data, issues related to small areas and small numbers would require concerted attention to address these problems. While these problems did not manifest in the context of the GIS mapping process that I used as a tool to augment participant dialogue in this study, it is prudent to be aware of the kinds of problems that can be encountered. I briefly outline these issues in the following two sections. The Ecological Fallacy This well-described geographical problem is sometimes called an "aggregative fallacy" (Susser, 1973 as cited in Jones & Duncan, 1995). It concerns the potential flaw in the transferability of results at the aggregate level to the individual level (Dudley, 1991; Hampson, 1991; Jones & Duncan, 1995). Jones & Duncan (1995, p. 28) warn "the aggregate relation may even be opposite to the within-place, individual relations on which it is based." Conversely, they draw attention to the problem of "atomistic fallacy" (Aker, 1969 as cited in Jones & Duncan, 1995) in which research at the individual level fails to acknowledge the context of individual action. It is noteworthy that clinical studies can suffer from the same kind of problem in terms of the transferability of results. 132 The Modifiable Areal Unit Problem (MAUP) In the context of health care geography, this problem concerns the spatial aggregation of individual data and geographical boundary determination. Openshaw (1984) and Openshaw & Taylor (1981) describe in detail the nature of this problem and examine possible solutions. It is endemic to spatially aggregated data. In brief, it refers to the almost innumerable ways that a geographical region can be divided into areal units in order to report and analyze spatial aggregations of individual data and the tendency to use one particular metric instead of entertaining viable alternatives (Cromley & McLafferty, 2002; Dudley, 1991; Meade & Earickson, 2000; Openshaw, 1984; Openshaw &Taylor, 1981). Surprisingly, researchers still pay little attention to the selection of areal units or alternative arrangements; the choice is typically based on blind tradition or data availability (Dudley, 1991). Alternatively, the problem is simply ignored (Openshaw & Taylor, 1981). Similarly, the health planning and health services literature is conspicuously silent on this subject as are the reports published by provincial and federal governments and health authorities with respect to health reform, regionalization, restructuring, and redesign plans. The question is how much does it matter and what can be done about it? Dudley (1991) provides a number of suggestions for researchers (which, by extension, are equally relevant to health services decision-makers and planners): (a) choose areal units which are relevant to the research, (b) develop a better understanding of areal data and a sensitivity to alternates, (c) investigate how alternate areal configurations could influence findings, and (d) explore alternative approaches. This problem also extends to computer-based cartography. It is common knowledge that different maps can be produced for the same data by using different areal units (Openshaw & Taylor, 1981). More recently, with the growing importance of the role of GIS, this remains a challenge for mapping. For example, small areas are more likely to demonstrate underlying patterns; larger areas can conceal local differences. The scale of areal units affects our 133 interpretation of data (Cromley & McLafferty, 2002). This can be overcome by using small-area data to demonstrate more detailed patterns, or by apportioning data for large areas based on small area data (Cromley & McLafferty, 2002). Even then, small-area health data is problematic because there are usually only a few events in small areas which leads to unreliable maps, problems associated with small numbers, and unreliable analyses (Cromley & McLafferty, 2002). Additionally, issues around confidentiality are important in small areas because people have a heightened ability to know each other's business. This issue of confidentiality, in fact, was an actual problem in this study, contributing to my decision to minimize inclusion of a number of maps in the Appendix, as noted earlier. With this technical journey through the methodology and data analysis methods used in this study, I turn now to the findings. Chapter Four: Findings I is a geographical and liminal journey that introduces and discusses the findings emerging from this study. Chapter Five: Findings II explores the concepts of boundaries and boundary objects, applying these findings to planning child and youth health services. 134 CHAPTER FOUR: Findings I—The Emergent Concepts [T]he world does not issue problems in neat disciplinary packages. Problems come up as complex, multidimensional, and often confusing congeries of issues. (Greenwood & Levin, 2005) I n t r o d u c t i o n In this chapter, I weave together two main strands—-process and content. I amplify my thought process, how it evolved, and how it was refined during the data analysis process. While flexible, this is a systematic, iterative, and comprehensive process, which demands constant comparison of data on many dimensions. I begin with identification of three preliminary conceptual categories emerging from the initial data gathering stage, and then I outline how analyses of subsequent data lead to two conceptual core-categories. I then discuss the findings as they emerged over the course of data gathering and analyses. This systematized, iterative process is central to using a constructivist grounded theory method. Several quotes from study participants are interwoven to illuminate the lived experience from the perspectives of four different stakeholder groups. In i t ia l F i n d i n g s I began data analysis by open (line-by-line) coding an initial set of semi-structured interviews. I then selectively coded 10 of the first 18 interviews (in order to achieve a reasonable balance of participants in each of the four stakeholder groups), including: three managerial decision-makers; two service recipients (public); three clinical decision-makers; and, two policy decision-makers. Five are male; five are female. Two are Aboriginal. The initial interviews were conducted in the participants' respective communities in the North West, including: Prince George; Smithers; Hazelton; Terrace; and, Prince Rupert. The coding process involved reviewing the responses to the nine interview questions explored in each of the 10 interviews, 135 and meticulously documenting the coding process in order to not lose the context of the data. This initial process involved approximately 380 pages of transcripts and resulted in over 1000 selective codes; however, this number included numerous duplicates. During this process, several patterns emerged. When I compared the codes between and within the data (including at least two from each of the four stakeholder groups and the two Aboriginal participants), the similarity of responses was striking. By design, participants were encouraged to answer the specific questions, but were also free to use the question as an opportunity to expand upon their own perspectives. During the first part of the analysis, the major categories remained remarkably consistent. I wondered whether this pattern would continue during the analysis of the remaining data. At that point I was proceeding on a question-by-question basis from the interviews. I again reviewed and then manually condensed the data to approximately 520 codes (mainly by eliminating duplicate codes). Through extensive analysis of these early data and selected codes, I identified four preliminary major categories (which I refined to three during subsequent analyses), and approximately 14 preliminary sub-categories. There was considerable overlapping terminology and the codes did not neatly categorize. I created three conceptual categories: perceptivity, emotivity, and inclusivity. These incorporated data regarding: participants' (a) perceptions of the provincial health system, (b) emotions generated by the health system, and (c) inclusion in the health system. These concepts are discussed in detail below. Numerous theoretical memos, especially over the mid-stage of data gathering and analysis, helped me to make sense of these early data. Building upon these memos, I will outline how my thinking progressed and became more refined during the data analysis process. I use data, including selected quotes from several participants interviewed during the preliminary data gathering stage. For emphasis and continuity with the subsequent interview process, I have also included several perspectives generated during interviews conducted later in 136 the study. I shared my preliminary findings during my introductory comments in the focus group sessions as a way of seeking early authenticity with the study participants, and in order to signal any need for adjustments or refinements as the study progressed. I also shared my findings during several follow-up sessions to discuss the findings. I invited all study participants and, based on availability, held sessions in Prince Rupert, Smithers, Terrace, Prince George, and Victoria to review my findings and seek feedback. The salient points are incorporated into this chapter and Chapter Five. P e r c e p t i v i t y A b o u t t h e H e a l t h S y s t e m Issues in this conceptual category are organized under three sub-categories: (a) understanding of the provincial health system, (b) considering issues in health services planning, and (c) acknowledging practical issues. Understanding the Provincial Health System Participants understood the health system in a number of ways. Within and between stakeholder groups, there is no common understanding of what it is, nor what it should be. This is not surprising and is not a trait unique to the North. At the most basic level, the term health system is subject to many interpretations depending on where one is situated, for example, as a patient, provider, manager, policy-makers, or researcher. Consequently, this can lead to misunderstanding, misuse, malfunction, and mistakes. It is impossible to effectively use, plan, provide, manage, or govern what we don't really understand. Individuals typically better understand component parts of the health system, but understand less well how the parts are connected and function together as a whole. This problem can be explained in terms of CAS and holism. It is worth reinforcing here the concept that was discussed in Chapter Two, that fragmentary thinking leads to fragmentary seeing and, even more problematic, experiencing the world as fragments (Bohm, 1980). In the health system, this type of fragmentary behaviour is common-place, even tacitly encouraged, in terms of how the system is planned, structured, funded, operationalized, and managed. Managerial, policy-maker, and parental perspectives are evident in the following accounts: I don't really think that there is much of a system and [there] hasn't been for a long time. (Manager) For me, really, it's trying to define what, where the health system ends and where the other systems kick-in because, I think, the way in which it's most commonly tossed around is a fairly narrow definition. (Manager) The participants are going to have ability or should gain appreciation of what the total picture is, not just their small part of it. And, that's often what happens.. .we deal only in segments, you know, of care. (Policy-maker) [Ljinks with the children and families—they're not strong yet. So...there's people that fall through the cracks, often in that age group between child and adult. That tends to be an interface that the system, I feel, does not work well right now. And, so, we shuffle people back and forth.... Every body is focusing on their area, but...that whole system is not connected. (Manager) I feel that the health system is layered....I do feel that we are on the lower level of the health system in this [North West] area. (Parent) I think bridging that gap between, say, the bureaucrat or the policy-maker and the real person [the patient] is something that we should do more of. (Manager) So, I'm going to contradict myself. On the one hand, I said I actually think we've got a pretty good system. And, now I'm going to contradict myself by saying, no, I don't think it actually functions as a system. I think it functions as separate parts that sometimes work in concert, and sometimes don't....I think most of us use that term [system] unconsciously. It's just a habit to say system without one thought. (Aboriginal Policy-maker) Participants perceive a large disparity between the rhetoric about and the reality of the health system. This transects all four stakeholder groups. There is also a significant gap between what participants describe as the current system at work and how it should be functioning. 138 Despite on-going reform, the health system is seen as fragmented at all levels. A health system is desired; however, from the perspective of participants, there is little or no capacity to create one that actually works well . It is not just about intervention. The system-wide seeming preoccupation with data doesn't resonate with participants. However, knowledge and information about the system and services does matter a great deal but this, too, is lacking. The people who know are typically not consulted. Centralized policy-making creates overly rigid policies that do not reflect local realities, nor are they flexible enough to accommodate local nuances. Effective communication even within the health system is still lacking. Some policy-maker and managerial perspectives on this dearth of activity follow: [A] lot of times policies don't reflect how we live and, so, a lot of times we as policy-makers have to, for instance, like our group homes, the policies are so rigid that it, you know, it doesn't let us benefit to the maximum that we can use that service... with a little bit of freedom for us to make changes, they wouldn't limit us. (Aboriginal Policy-maker) I have mixed feelings about policy-makers, mostly because I believe policy should work for us, not against us. And, I think if we're going to set policy, we should be prepared to change policy to suit our needs, to provide a more effective service. So, I guess that's what I would say about how policy-makers could be more in tune with our needs. And, I don't think the same policy fits for...everything all over the place either. (Manager) Many of these people are in such little communities that the data is almost meaningless for them, so you need to talk to people. I mean, you basically need to go to communities and talk to the people who see kids.. .the people in the community who really know what's going on. (Manager) [T]he biggest issue that I see in our systems is that of communication. It's not the money. It's not being able to have, even, expertise. It's the ability for the different areas of the system to talk to each other. (Manager) I think we need, obviously, we need input from families in regards to what's working well for them, and what isn't. (Clinician) 139 [W]e do see North West type of information, but it doesn't mean as much to me because I'm not always sure that those are the issues in our community....And, part of it is the small, the small numbers in, in communities. So, you always have to weigh how critical an issue is for a whole community based on the smaller numbers. (Manager) Another significant observation by participants is that some data, especially what is required to be captured by organizations and reported to governing boards and government, do not accurately, nor fully, reflect local realities. The meaning is taken out of the measurement— sterilized by conforming to standard methods of collecting data and forms used to report the data. The numbers belie the reality from which they were extracted. Such numbers offer little insight into the day-to-day challenges that confront those who manage, provide, or receive services. This illustrates why local stakeholders care about data and how it is used in local contexts. A s one seasoned clinician reflects: You can't use those true stories, or those things that you just saw when you were out in the field working with them [patients] because you have to maintain the confidentiality. So, how do we get over that confidentiality barrier so that the insurance agent whos's sitting on the board and doing the planning can have an insight into what's happening? How do we get that up there, or what do we collect to send forward? I mean, we send forward basic numbers—number of times you've seen the child, and number of times that they've cancelled, and that kind of stuff, but it really isn't a reflection of what's happening in their homes. (Clinician) Specifically around mental health services, for example, data inaccurately portray real needs at the community level (especially when small communities and small numbers are concerned). The essence of this concern is captured by a Focus Group: Our numbers don't dictate that we need more [mental health services], but the condition of the community does. (Focus Group - Terrace) [A]nd I sort of continually say, well, this is remote. And, often the province develops models that are urban-based, whether I would say, whether it's the 140 physical care end of, whether it's the mental health care end, the models that the province, with specialists, develops for you is an urban-based model. We then come along from the planning table and say, well, how do we revise this so that it fits that remote, rural.... But, they [those in positions of authority, power, and control] should be, they make decisions about an area like this, they should be knowledgeable about the conditions. (Focus Group - Terrace) The North West geography, especially in terms of transportation, is recognized as a challenge by participants, and this exaggerates—even controls, in the words of one participant— —how rural and remote issues can be addressed. Additionally, from the perspective of the North West, the population-based funding formulas do not acknowledge the imposing distances, mountains, and often inclement weather conditions. This is perceived despite attempts made by the formula to address rurality and other factors. In fact, the formula only allocates the amount of funds available to each H A . The five H A s must respond to their own regional nuances. This is exemplified below from several stakeholders' perspectives: Well, I think the North West is the most difficult of all of the three areas we have [in the NHA].. . .So, I mean, it's the geography...it really controls what you can do to a large extent. (Policy-maker) Transportation is a major problem because people; we don't have public transportation here. (Aboriginal Clinician) I think people down in the Lower Mainland take what they have for granted in a way, and they think that everybody else has it....Well, they, they don't really know. They have their own world and, and whatever...they have, you know. Well, you know.. .you live way up there kind of thing. (Parent) Geography, in the context of this study, includes such things as mountains, water, weather, distance, transportation, where people live, and the location of health services. In many cases, these dimensions create a geographical confluence and a considerable challenge, at times life-threatening, to those who must travel to remote and often isolated communities in the course of their work. It is hard to appreciate the risk that comes with this unless one has experienced it first-hand. In particular, central decision and policy-makers may never have to experience such travel in and out of places that are in many cases only reachable by boat or float-plane. A s one seasoned manager puts it: [T]he highest level of decision-makers are not well-connected with the true reality of life on the ground for people that are actually traveling in and out of places. (Manager) For this manager, one o f her "reality of l ife" trips by air into a remote coastal Aboriginal community is indelibly etched into her memory, given her near-death experience: Well, I mean, I can remember actually very well flying into Hartley Bay the day after the space shuttle went down. And, it was a deceptive day, calm after the storm. And, we went in over the glacier rather than around the waterway, and what we didn't run into. It was just horrific! It was just me and the pilot. And, the stuff.. .wasn't properly secured and there was stuff flying all around. We had to go so high that the air pressure, and I was, and I know I was mentally impaired, but I was trying to stop the pilot from being hit by the stuff. We crested the glacier, ran into humungous headwinds. The engine cut. We had to ski down the glacier while the pilot prayed to start the engine. (Manager) On the other hand, some people simply accept geography as part of l iving in the North, embraced and normalized into everyday life. For these residents, traveling outside of the North is the challenge, as exemplified by this parent: I don't see that [geography] as a factor being here... .Yeah, this is normal. I love it here. I mean I go to Vancouver, and I can't handle it. It is too busy... .This is where we're comfortable, and down South is just not a comfortable place for us....1 have no objections to even traveling up in the North area for care. (Parent) Considering Issues in Health Services Planning H o w planning is approached and who is involved in the process are critical to success. It is not just a matter of token involvement—people want to be involved right from the beginning of the process, but in a genuine way that respects their perspectives, knowledge, and experience. 142 It is the people who live in these communities that have the best sense of their realities and needs. Planning is felt to be generally poor; help is needed, but leadership is missing. The planning process needs to work from the ground up, not just from the top down which is more typically the practice, in spite of health reform initiatives. There needs to be horizontal coordination across the so-called "silos". The top means more than the BCMOHS in Victoria—it includes the N H A corporate offices in Prince George as the top "over there" from the perspective of the North West, parts of which are several hundreds, even thousands, of kilometers, from Prince George. This is accentuated by the centralization of some infrastructure support services, such as human resources and payroll. This tremendous distance poses symbolic and real barriers to meaningful relationships. It is also costly in terms of time and money. However, it is seen as a cost of doing business as suggested by this policy-maker: [A] 11 this [participatory planning] costs money and time, you know, particularly for managers.Administration has to be willing to allow managers to have that kind of time, and not just be putting out fires. (Policy-maker) When combined with cultural boundaries, such as between Aboriginal and non-Aboriginal perspectives of planning services, difficulties caused by geographical distance are compounded by other forms of distance (for example, power, professional, economic, cognitive, and social) as discussed earlier in Chapter Two. As this Aboriginal manager exemplifies, it is important to reduce the distance and barriers between the centralized FNIHB bureaucracy in this case and the community: [T]o be honest, I think there's a lot of bureaucratic nonsense that gets in the way of quite obvious decisions....[I]n a perfect situation you would hold meetings directly with the community...and they would openly discuss their needs and what they think could better improve access to services and services to children and youth. (Aboriginal Manager) 143 With respect to planning, specifically for child and youth health services in the North West, this is seen to be markedly deficient. The problems are similar to those expressed about the health system, such as lack of strategy, coordination, and integration. This view is shared across all four stakeholder groups, as evident below: [I]t's disjointed [the planning] and...I haven't seen a lot of strategic planning around children's services, frankly. (Manager) I think that there's a lack of serious planning [for health services for children and youth in the North West]. I think that there's a lot more coordination that could be done. (Policy-maker) I don't think that [child and youth health services in the North West] have been planned in any kind of integrated manner. (Clinician) [I]f the grassroots of the area aren't involved from the absolute beginning, it's [planning health services] not going to work. Because you can have, you can go away, write a nice little report - they need blah blah blah blah blah - and, if they don't think they need blah, blah, blah, then forget it. You ain't going to get there. What you're going to have to do is find out what they think the need is, and then work from there. (Clinician) I think planning should be done on an area basis from people who know what is normal for the area. What they normally see....They need to plan locally, and then pass it up. (Parent) Addressing Practical Issues Inter-sectoral. As participants would attest, sectors typically fail to collaborate to the extent required to achieve integration of services important to children and youth. Additionally, various levels of civic government play an important part in services related to health. The main sectors associated with child and youth health services include: health, child and family development, education, justice, and recreation. 144 From the perspective of participants, both the problems and the sectors that are supposed to solve them remain in their respective silos, or stovepipes as they are still popularly described. This, despite repeated calls to cut across these boundaries (which, in this case, function as barriers). Attention needs to be paid to developing practical coterminus boundaries for, at least, the B C M O H S , the B C M C F D , and the B C Ministry of Education. Federal boundaries with respect to Aboriginal health services further compound this problem. Gaps between jurisdictions and sectors create boundaries that are perceived to be, i f not actually, insurmountable for the average person seeking services. Policy-makers, managers, and a clinician candidly describe this problem: Oh, this business of the jurisdictional problems is everywhere. (Policy-maker) A l l of these stovepipes... we still have them, you know. (Policy-maker) [E]veryone's in their own bubble, you know. Hospital's in a bubble. Community public health's in a bubble. Probably policy-makers are in a bubble. (Manager) See, part of the problem is it's a jurisdiction thing again. Public health didn't want to give up that funding. I do home care assessments. But, I'm not supposed to because that's supposed to be done by somebody down.. .now how the hell can you do a homecare assessment out of an office over a phone in Terrace? You cannot see what's going on in that home. (Clinician) You know we use that term fragmented...or silos...and it's the integration across those paths that's missing. And, part of the goal of our recent restructure in B C was to start, together, to knit together some of those services and to reduce those barriers or silos, and we haven't done that yet. I don't know if it's because of... professional turf issues, or if it's just, you know, people in the system can't get out of their own way. And, people like.. .me, can't get out of my own way to figure it out, right. But, we need to weave the threads. (Manager) There's been a real gap because of the jurisdictional issues between Federal and Provincial [re: working in Aboriginal communities]. (Aboriginal Manager) 145 Inter-cultural. When the needs and values of distinctly different cultures clash, in this case Aboriginal with non-Aboriginal, the challenges of collaborating are accentuated. In spite of longstanding jurisdictional issues, such challenges must first be acknowledged before they can be addressed in the context of collaborative planning for health services. Very small, remote Aboriginal communities (many of which are coastal villages inaccessible other than by boat or air) are the least acknowledged, but perhaps the most inured over time. The importance of this was evident at a Coastal Communities Health Summit held in 2006, in Prince Rupert, BC . This summit specifically highlighted the gap in health and health services between BC Aboriginal and other coastal communities and the need to improve relationships (Loveridge & the Coastal Community Health Summit Planning Committee, 2006). In BC, there is still a large gap between the health of Aboriginals and the rest of the population (BC Provincial Health Officer, 2002). This observation is well-documented in the literature, including reasons that were discussed in Chapter Two. The following accounts exemplify how some of the participants perceive such issues: [W]e have so many Aboriginal communities that aren't even on the radar, probably of the North West Health Service Delivery Area, or the NHA....[a]nd because we have so many of these small areas [Aboriginal] that wouldn't be on the provincial radar either. (Manager) First Nations health is an issue....we've got a ways to go on First Nations health, let me tell you. (Policy-maker) [W]e're not exploring and we're not supporting indigenous knowledge and indigenous models, like that, I think, is the way that we have to go. I don't think that mainstream health care system, however we describe it, is working for Aboriginal people in the North... and I think that the whole idea of paying attention to the determinants in real, practical ways around poverty and isolation and culture is key. (Aboriginal Policy-maker) 146 [G]ive us a free-hand in making decisions of how services should be delivered. You know it's not going to be 'cause most of the policies are made, in regards to health or other social services, are made down South, and they don't really have any relevance to how we live in the North in this isolated area [remote First Nations community]. (Aboriginal Policy-maker) [T]hey [policy-makers] need to hear, not just sit around the boardrooms, and consider whatever they're considering. But, they need to hear from the common man, and the layperson, and the professionals, where the problems are. And, where the successes are because those are just as important. (Aboriginal Policy-maker) [W]hen you talk about health system, I would say that the one that we are forced to use and forced to accommodate to us doesn't always work for us, and that's given federal and provincial guidelines and policies that are put into place at the time. Our own health system, it seems to work better because there's no rigid guidelines that we have to use...They take it individual by individual. (Aboriginal Policy-maker) As the following policy-maker recognizes, the health system has not addressed the unique issues facing Aboriginal families. That there is something different is one thing; understanding it is yet another. More important, doing something about it remains elusive. Child and youth in a...European background family is one thing. Child and youth in an Aboriginal family is something else. And, you know, we have to understand what that something else is. (Policy-maker) I think that we need to get more information from the community and from other jurisdictions around culturally appropriate models for children and youth. (Aboriginal Policy-maker) In spite of such difficulties, an approach which truly respects inter-cultural issues and engages in a participatory approach does achieve breakthrough results. In one North West community, the following process exemplifies how efforts to work together pays-off in unanticipated ways when problems are addressed in a collaborative, respectful way: 147 It's a hard struggle to work collectively.. ..We found that the people needed to spend time just hearing and listening and then, all of a sudden, you know, that over, we kind of went to this next stage where [we] started working collectively, and we ended up with a kind of, a whole new, way of looking. We looked at an Aboriginal more of a traditional structure of looking at the child in the centre with everybody around. (Clinician) But, the converse can be true at the individual level. Stereotyping and outright racism may be less visible in terms of the general populace, but at the level of interaction between Aboriginal consumers and non-Aboriginal providers, racist behaviour does surface in day-to-day life. It may be concealed and invisible, but it is real to those who experience it, such as this Aboriginal manager who sought services as a patient: I've had doctors at clinics treat me like I was just this dumb Indian. And, I was just there to get drugs. And, this, just happened last year. And, so, it's real. (Aboriginal Manager) Priority health service needs. With respect to specific health service needs, the dearth of services for children and youth with mental health and addictions in the North West was raised numerous times by different stakeholder groups. By design, this study did not set out to undertake a needs assessment for children and youth; however, as the need for mental health and addictions services was raised so many times, I felt ethically-bound to highlight this plight. Drawing from the literature and the data gathered in this study, I outline below the issues and the need for services for children and youth in the North West, particularly in remote communities. This huge issue also arose frequently during the recent Public Consultation process undertaken throughout the North by the N H A in May/June, 2004. The report specifically notes that "[m]ental health services (particularly for youth) are perceived to be in crisis." (Northern Health, 2004, p. 5). One of the senior managers in the North West summarizes the problem as follows: 148 Basically, people talked about the lack of child health services, in particular, mental health. That's the big one. It was around the drugs, the alcohol, teen pregnancies, the suicide attempts, the behavioural problems in schools. (Manager) Yet, given that this problem is characterized as a "crisis", surprisingly little, i f anything, has changed on the ground in the ensuing two years from the perspective of the participants in this study. Even worse, the problem is seriously under-reported in very small communities due to issues of privacy and confidentiality and the relative ease of identifying at-risk children and youth. This is a serious paradox of protecting privacy literally at the expense of life in some cases—a situation of cautious legalism prevailing over common sense, with children, youth, and families caught in the moribund middle ground. This dilemma is captured well by an Aboriginal manager in a remote Aboriginal community who experiences this problem first-hand and is frustrated and angered: [W]e're not allowed to [collect data on mental health cases] because we're too small, too easy to identify.... There could be a bigger number and if we could find some way th