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Engaging Ethnocultural Communities on Hepatitis C Partpart IVII Engaging Ethnocultural Communities on Hepatitis C PartPart IVII Canadian Liver Foundation and Canadian Ethnocultural Council Final Report March 31, 2009 Engaging Ethnocultural Communities on Hepatitis C Part IV Prepared by: Canadian Liver Foundation and Canadian Ethnocultural Council Submitted to: Hepatitis C Prevention, Support, and Research Program Public Health Agency of Canada Final Report March 31, 2009 Engaging Ethnocultural Communities on Hepatitis C - Part IV Table of Contents 1.0 Executive Summary .......................................................................................................... 1 2.0 Background ....................................................................................................................... 7 2.1 Partners ....................................................................................................................... 7 2.1.1 Canadian Liver Foundation (CLF) .................................................................. 7 2.1.2 Canadian Ethnocultural Council (CEC) .......................................................... 7 2.2 Hepatitis C .................................................................................................................. 8 2.2.1 About Hepatitis C ........................................................................................... 8 2.2.2 Hepatitis C in Ethnocultural Communities in Canada .................................... 9 2.3 Engaging Ethnocultural Communities on Hepatitis C – Part I ..................................10 2.4 Engaging Ethnocultural Communities on Hepatitis C – Part II ................................ 12 2.5 Engaging Ethnocultural Communities on Hepatitis C – Part III ............................... 13 3.0 Engaging Ethnocultural Communities on Hepatitis C – Part IV ............................... 15 3.1 Project Overview ...................................................................................................... 15 3.1.1 Project Goal and Objective ........................................................................... 15 3.1.2 Project Timelines ........................................................................................... 15 3.2 Project Activities ...................................................................................................... 16 3.2.1 Reconvened Project Team ............................................................................. 16 3.2.2 Notified the EAC, the CEC Members and the CEC Network upon Receipt of Project Funding ........................................................................... 16 3.2.3 Confirmed Participating Organizations from the EAC, the CEC Members and the CEC Network .................................................................................... 17 3.2.4 Prepared and Distributed Information Packages to Participating Organizations ............................................................................ 17 3.2.5 Followed up with Each Participating Organization ....................................... 17 3.2.6 Recruited and Selected 40 Key Informants .................................................... 17 3.2.7 Recruited and Selected Eight Facilitators and Eight Recorders (Note takers) ................................................................................................... 18 3.2.8 Conducted Orientation of Facilitators and Recorders (Note takers) .............. 18 I 3.2 Project Activities (cont’d) 3.2.9 Selected 400 Focus Group Participants ......................................................... 18 3.2.10 Prepared, Organized, and Coordinated 40 Focus Groups ............................. 19 3.2.11 Conducted 40 Focus Groups ......................................................................... 19 3.2.12 Transcribed and Translated Proceedings from Each Focus Group Session .. 20 3.2.13 Compiled, Synthesized and Analyzed Data .................................................. 20 3.2.14 Prepared Final Project Report and Submitted to PHAC ............................... 20 3.2.15 Dissemination ............................................................................................... 21 4.0 Focus Group Participants and Findings by Ethnocultural Community and by City ...................................................................................................................... 23 4.1 Chinese ..................................................................................................................... 24 4.1.1 Focus Group Participants ............................................................................... 24 4.1.2 Focus Groups Findings ................................................................................... 25 4.2 Egyptian .................................................................................................................... 44 4.2.1 Focus Group Participants ................................................................................ 44 4.2.2 Focus Group Findings ..................................................................................... 45 4.3 Filipino ...................................................................................................................... 62 4.3.1 Focus Groups Participants .............................................................................. 62 4.3.2 Focus Group Findings ..................................................................................... 63 4.4 Vietnamese ................................................................................................................ 78 4.4.1 Focus Group Participants ................................................................................ 78 4.4.2 Focus Group Findings ..................................................................................... 79 5.0 Focus Group Discussion Highlights .............................................................................. 93 5.1 Similarities among the Four Ethnocultural Communities ........................................ 93 5.2 Differences among the Four Ethnocultural Communities ........................................ 95 6.0 Recommendations ........................................................................................................... 99 6.1 Recommendations from the Focus Groups .............................................................. 99 6.1.1 Recommendations from the Chinese Focus Groups ...................................... 99 6.1.2 Recommendations from the Egyptian Focus Groups .................................... 100 6.1.3 Recommendations from the Filipino Focus Groups ......................................100 6.1.4 Recommendations from the Vietnamese Focus Groups ................................ 101 6.2 Recommendations from the Project Team .............................................................. 102 II 7.0 Project Evaluation.......................................................................................................... 103 7.1 Evaluation of Orientation Session for Facilitators by the Focus Group Facilitators.103 7.2 Evaluation of Project Process by the Focus Group Facilitators ............................... 105 7.3 Evaluation of Project Process by the Key Informants (Coordinators) ..................... 112 7.4 Project Team Observations ....................................................................................... 123 8.0 Conclusions .................................................................................................................... 127 9.0 Appendices 1. Invitation Letter to Organizations ........................................................................... 131 2. Invitation to Focus Group participants .................................................................... 133 3. Informed Consent Form .......................................................................................... 135 4. Focus Group Questions ........................................................................................... 141 5. Members of the Expert Advisory Committee ......................................................... 143 6. Job Description of Key Informants ......................................................................... 145 7. Key Informants (Coordinators) ............................................................................... 147 8. Focus Group Facilitators ......................................................................................... 149 9. Recorders (Note takers) ........................................................................................... 151 10. Orientation Session for Facilitators – Agenda ......................................................... 153 11. Evaluation Form for Orientation Session ................................................................ 155 12. Focus Groups Schedule ........................................................................................... 157 13. Canadian Liver Foundation – Profile ....................................................................... 161 14. Canadian Ethnocultural Council – Profile ............................................................... 163 15. Hepatitis C Brochure ............................................................................................... 165 16. Local Health Resources – Hepatitis C ..................................................................... 169 17. Canadian Liver Foundation Offices ......................................................................... 171 18. Focus Group Participants by
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