Anishnawbe Health Toronto Urban Aboriginal Diabetes Research Project Report December 2011 Report Authors Lynn F. Lavallée and Heather A. Howard with contributions by Krystine Abel, Carolyn Akiwenzie, Jessica Keeshig-Martin, Melissa Ricciuti, Nancy Sagmeister and Ernie Sandy When referencing this research project please cite the authors and Anishnawbe Health Toronto. A suggested citation is: Lavallée, L.F. & Howard, H.A. (2011). Urban Aboriginal Diabetes Research Project Report. Anishnawbe Health Toronto. Toronto, ON. The cover artwork is a collection of the symbols and pictures developed by the participants of this research. This artwork should not be used without the permission of the authors and Anishnawbe Health Toronto. Table of Contents TABLE OF CONTENTS III FOREWORD VI ACKNOWLEDGEMENTS VIII KINA GO GMUSHKIIMNAAN IX THE RESEARCH TEAM BIOGRAPHIES X CO-PRINCIPAL RESEARCHERS X RESEARCH CO-ORDINATOR XI INDIGENOUS RESEARCH INTEGRITY ADVISOR (WAASEYAAGIISHIG NINI BEMSET) XI RESEARCH ASSISTANTS XII GOVERNING CIRCLE XIII DEDICATION XV INTRODUCTION 1 BACKGROUND TO THIS PROJECT 1 MANDATE AND OBJECTIVES OF THE RESEARCH 1 TIMELINE OF THE RESEARCH PROJECT 3 OVERVIEW OF THIS REPORT 3 REVIEW OF LITERATURE 6 DIABETES AND RESOURCES 6 ISSUES OF SPECIFIC CONCERN TO ABORIGINAL PEOPLE WITH DIABETES 8 WHOLISTIC APPROACHES TO DIABETES RESEARCH 8 METHODS 12 RESEARCH ETHICS 12 SELECTION AND RECRUITMENT OF PARTICIPANTS 14 PARTICIPANT CONSENT 15 RESEARCH ACTIVITIES 15 iii CONCEPT MAPPING – EXPLANATION OF THE METHOD 15 HOW WE USED CONCEPT MAPPING IN THIS PROJECT 17 ANISHNAABE SYMBOL-BASED REFLECTION - EXPLANATION OF THE METHOD 17 PHOTOVOICE – EXPLANATION OF THE METHOD 18 HOW WE USED ANISHNAABE SYMBOL-BASED REFLECTION AND PHOTOVOICE IN THIS PROJECT 18 RESULTS AND DISCUSSION 19 THE PARTICIPANTS 19 GENDER 20 SELF-IDENTIFICATION 20 AGE 21 YEARS LIVING WITH DIABETES 22 INCOME 22 CONCEPT MAPPING 23 LOOKING AT THE CLUSTER MAP THROUGH A WHOLISTIC LENS 23 CULTURE AND CEREMONY IN RELATION TO FRUSTRATIONS WITH WESTERN MEDICINE AND COMMUNITY WELLNESS 26 DIABETES MANAGEMENT CHALLENGES IN RELATION TO EMOTIONAL STRESSORS, WHOLISTIC FEAR AND CHALLENGES TO HEALTHY EATING 27 A CLOSER LOOK AT EACH CLUSTER AND THE AGREEMENT RATING 28 CONCEPT MAPPING SUMMARY 37 QUANTITATIVE ANALYSIS WITH THE STATISTICAL PACKAGE FOR THE SOCIAL SCIENCES (SPSS) 39 CEREMONY AND CULTURE 39 COLONIAL INFLUENCE 41 TRADITIONAL AND WESTERN WAYS COMING TOGETHER 42 MANAGE NATURALLY WITHOUT MEDICATION 44 HEALTHY EATING AND PHYSICAL ACTIVITY 45 DENIAL, ACCEPTANCE, AND SELF-RESPONSIBILITY 47 POSITIVE OUTLOOK AND DEPRESSION 50 SHARING CIRCLES AND WHOLISTIC PROGRAMMES 50 QUANTITATIVE ANALYSIS SUMMARY 52 ANISHNAABE SYMBOL-BASED REFLECTION 53 PHOTOVOICE 63 REFLECTIONS ON THE ASBR AND PHOTOVOICE SHARING CIRCLE 66 CONCLUSION AND RECOMMENDATIONS 68 COMMONALITIES AND DIVERSITY 68 RESEARCH IS MEDICINE 69 FRAMEWORK FOR SERVICE PLANNING AND EVALUATION 70 WHOLISTIC PROGRAMMING 70 MOBILE WHOLISTIC OUTREACH 71 iv TARGETED OUTREACH 71 WOMEN AND GESTATIONAL DIABETES 71 CHILDREN AND YOUTH 71 EVALUATION 72 LIMITATIONS 72 RECOMMENDATIONS 73 TARGETED OUTREACH 73 POLICY 73 WESTERN PRACTITIONERS 74 SHARING CIRCLES WITH PEERS 74 PROGRAMMATIC RECOMMENDATIONS 74 NUTRITION 75 EDUCATION AND PREVENTION 76 EMOTIONAL SUPPORTS 76 CLOSING 78 REFLECTIONS FROM THE RESEARCH TEAM 79 REFLECTIONS BY KRYSTINE ABEL 79 REFLECTIONS BY CAROLYN AKIWENZIE 80 REFLECTIONS BY JESSICA KEESHIG-MARTIN 81 REFLECTIONS BY MELISSA RICCIUTI 82 REFLECTIONS BY NANCY SAGMEISTER 83 REFLECTIONS BY ERNIE SANDY 84 REFERENCES 85 APPENDICES 89 APPENDIX A – EXCERPTS OF THE RESEARCH AGREEMENT 90 APPENDIX B – DEMOGRAPHIC SHEET, 79 STATEMENTS AND RATING SHEET 91 v Foreword By the Toronto Central Local Health Integration Network “Diabetes care and treatment involves providing Aboriginal-specific programs and services that will help individuals living on- and off-reserve to manage their diabetes, prevent complications and promote well-being.” (Ontario Aboriginal Diabetes Strategy, MOHLTC 2006) In January 2009 the Toronto Central Local Health Integration Network (TC LHIN) was asked by the Ministry of Health and Long-Term Care (MOHLTC) to design a project for a population at high risk of having diabetes as part of the Provincial Diabetes Strategy. With the guidance from the TC LHIN Diabetes Steering Committee, the LHIN identified the urban Aboriginal community as a high-risk and vulnerable population with diabetes rates three to five times greater than the general population. Beyond the high rate of disease, diabetes is a significant concern within this community given that they generally experience an earlier onset, greater severity at diagnosis, high rates of complications, lack of accessible services and an increased prevalence of risk factors. In Toronto, Aboriginal persons with diabetes can access services for care and management of their disease through a range of health and social services providers from both Aboriginal and non Aboriginal service providers. While Toronto’s Aboriginal health providers predominantly serve a downtown, high- needs part of the Aboriginal community, their service reach extends beyond TC LHIN boundaries (Greater Toronto Area – GTA). Provincial health administrative data lacks Aboriginal/ethnic identifiers; thus there is lack of information on Aboriginal specific service usage. A time-limited TC LHIN Aboriginal Working Group was formed to discuss and scope the issues around diabetes in the Toronto Aboriginal community as well as to develop a work plan for the scope of this Pilot project. A gap analysis was conducted through this Working Group, and it was found that: • The Aboriginal population have poorer access to health services than non-Aboriginal population • Identifying members of GTA Aboriginal community with diabetes is a challenge • The “Reactive” health delivery model is currently preferred and this may not be suited for Aboriginal at-risk populations • “Poverty not conducive to healthy lifestyle” • Fear/distrust of health professionals: lack of caregiver cultural sensitivity • Lack of access to traditional Aboriginal practices and approaches • Complications associated with multiple health issues • Lack of acceptance and understanding of diagnosis: stigma associated with the disease Based on this knowledge and the recommendations of the Working Group, along with key informant interviews conducted with Aboriginal leaders, health service providers and diabetes experts in Toronto, it was identified that there are two areas which require further research and exploration in order to develop a planning model for the delivery of services to this unique population: a) there is a great need to understand the particular characteristics and needs of Aboriginal populations with diabetes for successful outcomes; and b) formulate a better understanding of the modes and ease of access to services and supports available in Toronto to Aboriginal persons with diabetes. vi Based on the recommendations of the Aboriginal Working Group and the TC LHIN Diabetes Steering Committee, a decision was made to focus on gathering further evidence through a culturally respectful, community based participatory research study as the focus of the Pilot Project. The goal of this research is to equip the health care system with tools and appropriate knowledge to develop interventions and more relevant services that will help improve access to diabetes supports for Toronto’s Aboriginal community and reduce the number of preventable interventions, and unnecessary emergency room visits. To ensure success, a partnership was developed with an Aboriginal health service provider - Anishnawbe Health Toronto that was to lead the development of an Aboriginal community led research model and to conduct the research. Prior to this partnership, the TC LHIN was able to collaborate with the Aboriginal Research Team, led by Dr. Janet Smylie, and the Centre for Research on Inner City Health, St. Michael’s Hospital. The TC LHIN would like to thank Dr. Smylie for her leadership, guidance and work on the early stages of this research. The TC LHIN is also grateful and humbled by the tremendous work led by the Co-Investigators, Lynn Lavallée and Heather Howard, as well as the leadership and guidance provided by the Governing Circle, who maintained the utmost respect and integrity for the research. The TC LHIN is also grateful to the members of the Working Group and the Diabetes Steering Committee for their hard work in identifying the scope of this project. Finally, TC LHIN is grateful to Anishnawbe Health Toronto for community leadership in this initiative. vii Acknowledgements We are extremely grateful to the 138 participants who candidly shared their stories, challenges and hopes with us. Without them this research would not have been possible. It is for the community that research should be conducted and we hope that your lives will be forever changed as a result of participating in the project. We want to thank you from the bottom of our hearts. We would like to acknowledge the working group that worked for almost two years to develop the focus of this project. The research team would like to acknowledge and thank Anishnawbe Health Toronto (AHT), specifically Joe Hester, Executive Director who took responsibility for this project for the betterment of the Aboriginal community in Toronto. There are tremendous responsibilities that come with administering a research grant. Particularly within the Aboriginal community, research can be challenging and may conjure up memories of