2011-11-11 Comm Engagement RT Final 9 Without Pics For Website

We Are Not Afraid: Knowledge is Empowering
Colette Plasway, Emma Palmantier

The Northern BC Aboriginal HIV/AIDS Task Force wanted to know how they can advocate the leadership from the various government officials for better HIV/AIDS programming in the Northern Aboriginal communities. Emma Palmantier and Colette Plasway visited 53 communities and surveyed them. The common themes were youth suicide in the North West and Northern Interior regions and the prevalence of violence and gang rapes in the Northern Interior. Overall the North West has the most harm reduction activities and awareness about HIV/AIDS in their communities. One of the recommendations includes a change in the HIV/AIDS funding formula for the First Nations communities to reflect their needs versus per capita. The communities are requesting for support systems for themselves and people coming back who might be positive. The community front line workers are requesting for First Nation leadership support to advocate for better programs for HIV/AIDS and in the community to understand this complicated disease.
Northern BC Aboriginal HIV/AIDS Task Force 987 4th Avenue, Prince George, BC V2L 3H7 Tel: (250) 562-3591 Fax: (250) 562-2272 2/14/2012
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987 4th Avenue, Prince George, BC V2L 3H7
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MESSAGE FROM THE CHAIR

To Chiefs, Councillors, Hereditary Chiefs, Health Directors, Community Health nurse, Community Health Representatives, frontline workers, youths, and elders I would like to thank you for welcoming the staff and myself to your homes, and traditional territory. It was with great honour to be given a chance and the financial resources to travel and meet with you face to face to listen to challenges and barriers to services on HIV/AIDS. HIV/AIDS among our people is a serious health issue with an ever increasing need for action and strategic planning. As infection rates continue to rise, more and more families and communities are faced with many and complex challenges that go with this disease. It is important for the governments, health professionals, and other stakeholders to understand that northern communities face unique challenges. Northern communities face sub-standard health care with little access to health care because of their isolations, transportation, low income, and the added burden of patient transportation costs to urban facilities. There is an urgency that requires political support so that HIV/AIDS among our people is properly addressed. Chiefs, Councillors, and Hereditary Chiefs need to speak publicly about HIV/AIDS so the community members hear the leaders talking about these issues and begin to take it seriously. Health Directors, frontline workers, youths, and elders identified the lack of sufficient financial resources to deliver HIV/AIDS education workshop, lack of professional resources for Point of care testing in the community, treatment, support, and palliative care. Those that are diagnosed with HIV/AIDS have very little choice but forced to move to urban communities such as Prince George and Vancouver to access health care and support service. The need for treatment, support, and palliative care facility to service the people has been highly recommended. With over half the population being youth, the need to design and deliver youth specific interventions is of utmost necessity. Youth need to be full participants in determining priority actions which address their needs. In some communities there is a high rate of youth suicides, violence, gang, drugs and alcohol, and teen pregnancies have been identified. The issue of teen pregnancies indicates to some extent the frequency of unprotected sex. Peer pressure also is a deciding factor and some end up homeless because they do not have the necessary skills to secure a job and home or prefer to be outside the home and their immediate family due to abuse. The report identifies key issues that need to be action by our leaders to the governments, health professionals, and other stakeholders to move forward. In closing, by acting strategically, working collaboratively, and sharing our knowledge, skills, and resources we will be more effective and the potential to stop HIV. Emma Palmantier, Chair Northern BC Aboriginal HIV/AIDS Task Force
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TABLE OF CONTENTS
MESSAGE FROM THE CHAIR ................................................................................... 2 EXECUTIVE SUMMARY .......................................................................................... 6 PROJECT HISTORY AND BACKGROUND ................................................................... 11 Project Context .............................................................................................. 11 Project Background ......................................................................................... 12 History of Project ......................................................................................... 12 Purpose of the Project ................................................................................... 12 Regional Statistical Analysis ............................................................................. 13 FNIH HIV Funding Allocation Explained ................................................................ 14 PROJECT DESCRIPTION ...................................................................................... 14 Project Objectives .......................................................................................... 14 Project Organization ........................................................................................ 15 Northern BC Aboriginal HIV/AIDS Task Force Staff .................................................. 15 Consultants ................................................................................................. 16 Project Stakeholders ........................................................................................ 16 Project Activities ............................................................................................ 17 Verification of the Data .................................................................................. 18 Strengths and Limitations ................................................................................ 19 PROJECT RESULTS ............................................................................................ 20 Leadership and Community Support for HIV/AIDS ..................................................... 20 Access to Services ........................................................................................... 25 Youth .......................................................................................................... 26 Harm Reduction.............................................................................................. 30 HIV/AIDS Programming in the Community .............................................................. 32 Research ...................................................................................................... 34 CONCLUSION ................................................................................................... 35 RECOMMENDATIONS AND PRACTICES ..................................................................... 38 For Federal, Provincial, and Regional Funding Authorities .......................................... 38 for First Nation Leadership and Communities in Northern BC ....................................... 42 For Individuals ............................................................................................... 43 APPENDICES .................................................................................................... 44 Appendix 1: Schedule of Community Visits During Phase I ........................................... 44 Appendix 2: Schedule of Community Visits during Phase II .......................................... 45 Appendix 3: Community Engagement Survey Questions .............................................. 46
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ACRONYMS
BCR CHR CHN FNIH NE NI NW NH ATKT Band Council Resolution. It is a record of a decision made by Chief and Council at a Band Council meeting. It is a legal document and therefore requires a quorum. Community Health Representative Community Health Nurse, which includes both the FNIHB and community nurses. First Nations Inuit Health, part of Health Canada North East region: As far west as Chetwynd; north to Fort Nelson. Northern Interior region: as far west as Houston, north to Kwadacha, east including McLeod Lake and south to the Quesnel area North West region; as far north as Taku River Tlingit, south to Skidegate/Masset, and west to Lax Kwalaams. Northern Health aka Northern Health Authority Around The Kitchen Table is training provided by Chee Mamuk of the BC Centre for Disease Control. For more information see there guide online: http://www.bccdc.ca/NR/rdonlyres/8DD902AB-38CB-42C0-A02554B0CCC0553C/0/STI_Chee_Mamuk_ATKTguide_20100409.pdf
ACKNOWLEDGEMENTS
We would like to acknowledge and thank all of the communities that welcomed us into their traditional territory to conduct our business. It was an honour to meet with everyone and to learn about your successes and issues. A big thank you to our sponsors the Northern Health, especially Kathy MacDonald for her support and advocacy; Theresa Healy for her academic editing and graphs and Tanis Hampe for her ethical review of the project tools and statistics. Another person who has helped with support and financial contribution is Leslie Varley from the Provincial Health Services Authority. To Carrier Sekani Family Services our host agency, especially Warner Adam, Executive Director for providing support for our travel schedule and access to professional counselling. Last but certainly not least Helen Roberts for her tenacity to work with the First Nations Communities to set up the meetings, make all travel arrangements for the staff and also her willingness to step in and actually visit some of the communities.
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EXECUTIVE SUMMARY
This report presents the results of the Community Engagement Project undertaken by the staff for the HIV Task Force. This two year long process has revealed some striking and important information relevant to, not just the Task Force, but also to funding agencies at Federal, Provincial and Regional levels, for Aboriginal Leadership in Northern BC, and for Communities and individuals themselves. The geographical area of the project includes the North West, Northern Interior and the North East regions with an estimated population of 85,000 Aboriginal people. The Task Force Chair and the Program Coordinator visited 53 of 55 First Nation communities in their traditional territory and met 252 participants in total consisting of Health Directors, CHRs, Youth and Elders. We also tried to meet with a total of 14 Chief and Councillors. We applied for funding in 2008 and started the project in September 2009 in the Dease Lake Area. It took 14 months to visit all 53 communities. The projects main purpose was to find out where the First Nations communities were at with their HIV/AIDS programming. A three-year statistical analysis is provided of the number of people in each region who were newly diagnosed with HIV from 2007 to 2009. In the NW there was average of 5.33 people newly infected with HIV/AIDS. In the NI there was an average of 10 Aboriginal people newly infected. And in the NE no one was newly infected. There is a significant over representation of Aboriginal vs. Non-Aboriginal people newly infected by HIV/AIDS. In 2007 there were 3.17 times more Aboriginal vs. Non-Aboriginal people newly infected; in 2008 1.56 times more and in 2009 it went down to 1.08 times more. One of the pressing questions that the communities asked was how the FNIH HIV funding formula was calculated. The BC allocation in 2011/2012 was $200,000 which was distributed to the 200 FN bands was based on population not needs nor remoteness.
PROJECT OBJECTIVES
To meet the First Nations leaders in their traditional communities not their urban offices. To provide an update to the communities about the Task Force and its activities. To identify the issues from the communities so that we could advocate and liaise with the government authorities to help improve access to services. To develop an action plan with the First Nation leaders vs. just a report that might end up on peoples desks and not acted upon.
The project organization consists of the 3 Task Force staff. Chair Emma Palmantier, Colette Plasway, Program Coordinator and Administrative Assistants Bonnie Cahoose and Helen Roberts. The latter was with the Task Force for the duration of this project and the former was hired in July 2011. Two other consultants were involved in the project. Dr. Theresa Healy, Regional Manager of the Healthy Community Development at Northern Health provided her invaluable editorial assistance to start the draft report in 2010. In 2009 Tanis Hampe, Regional Director of the Research and Evaluation program at Northern Health used an ethical research tool to review the data collection, management and presentation and determined that this was not a formal research project. Carrier Sekani Family Services also provided indirect assistant through their employee assistance program. The project stakeholders are the 55 First Nation communities which includes the NW, NI, and NE regions. The HIV/AIDS Task Force currently has 25 members comprising of 2 FNIH, 1 MCFD, 1 Public Health Agency of Canada, 1 Ministry of Health, 2 Northern Health and 1 Chee Mamuk, Red Roads 987 4th Avenue, Prince George, BC V2L 3H7 Page 6
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Society, Healing Our Spirit, Positive Living North, RCMP, CSFS Board, 3 Communities, 1 Elder, 5 Youth, 3 Aboriginal people who have HIV. They meet quarterly. Once the project funding was obtained the Former Administrative Assistant sent out letters and then followed up with calls to negotiate the community visits for the Chair and Program Coordinator. The meetings were explained and the communities were encouraged to include Chief and Council, Health workers, Elder and Youth and any other community member. The Program Coordinator worked with the Task Force to develop the research tool and database and entered the data once it was collected. The project was done in two phases; September 2009 to March 2010 and April 2010 to October 2011. Up to 252 people took part in the meetings and the data was entered as a collective per community and not individually. The data was verified by various means including: face-to-face meetings, letters, three regional sessions, two Leadership Forums, and the First Nations Health Councils leadership caucus sessions. The strengths of the project are that the Task Force Chair and Program Coordinator are First Nations and are already aware of the Health issues of the communities. The limitations is that this is not a formal research project; rather an opportunity to network with the communities and provide an update on the Task Force activities. The project result is presented based on five major themes: Leadership and Community Support for HIV/AIDS, Access to Services, Youth, Harm Reduction and HIV/AIDS Programming in the Community. The survey comprised of 40 questions however 26 will have their results provided as the remaining 14 were redundant.
LEADERSHIP AND COMMUNITY SUPPORT FOR HIV/AIDS

The work is definitely cut out for community leaders to provide their support to HIV/AIDS programming since less than half of them have BCRs supporting it (43.40%). The number of communities that support it through their Community Health Plans is much more encouraging at 66.04% which is just over two thirds. The common barriers identified by the communities to provide the HIV/AIDS work that they want to provide include: lack of funding, access to health services, lack of leadership and community support, lack of harm reduction programs, especially for the Youth and cultural sensitivity by health professionals. There was an average of 1.33 people who were known in the communities to have HIV/AIDS which was a total of 71 in all three regions. The biggest indicator that work is needed in the communities is the number who said they were ready to welcome their members back who have HIV/AIDS 19 of 53 communities which is 35.84%. The main reasons were the communities need more education and awareness training, leadership support, fear/denial, and the lack of a strategic plan.
ACCESS TO SERVICES
The funds that each First Nation community receives from FNIH for HIV/AIDS awareness were mainly spent on facilitators for workshops, workshops, DVDs and books. An overwhelming 98.11% felt that the amount of funds they receive for HIV is inadequate.
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The average km a community member has to travel for a regular appointment is approximately 81.87 km return and 307.32 km return for specialist appointments. This travel reflects road travel and does not take into account air or ferry mileage. Another point to consider is that many of the communities are remote and are accessible through gravel roads which may be hazardous to drive such as the Telegraph Creek and Kincolith road. The most common method for travel is personal vehicles, relatives, public transit, NH connection bus and unfortunately via hitchhiking. Many health offices stated that there are a growing number of people skipping their appointments because they cannot find a ride.
YOUTH
There are 1 in 5 communities that have a Youth Council (20.75%); the main reason for the lack of councils is the low interest from the youth to have one. Only 1 of 3 community youth asks their health offices questions about HIV/AIDS (33.96%). The people they do ask include the Community Health Nurse, their teachers, peers, parents and doctors. There is a lot of interest from the Youth to have more education and training workshops/conferences of 84.91% and mainly interested in Youth Train-the-Trainers and peer training. Their preference is regional workshops so they can network with other Youth. There is a little more than half of the communities whose youth are taught to respect themselves when making decisions to engage in sex (56.60%). The most heard comment about this question though is that many youth respect themselves when sober but not when they are under the influence of drugs or alcohol. Another disturbing trend is that there is a high incidence of young girls being drugged and raped, gang banged, gang bangs being used as a bullying tool, teen pregnancies, suicide, and drug and alcohol abuse. Some of the communities who tried to get the parents to teach their youth self-respect are resisted as the parents get offended. There are a little over half of the communities that offer harm reduction activities for their youth (52.83%). The confidence that the youth have for their health offices is also a little over half at 54.72%. When asked if the communities felt that their youth were afraid of the lack of confidentiality again over half (50.94%). An interesting comment was made that there is no such thing as confidentiality in an Aboriginal community as everybody knows everybody elses business.
HARM REDUCTION
There was a respectable amount of 71.43% of the communities that offered harm reduction activities. They were mainly various types of support groups including cultural. Some cultural groups incorporated sharing circles to help teach self-respect and others were easily accessible groups that allowed people to do crafts while learning about various health topics such as HIV/AIDS. With respect to needles there were 45.28% of the communities that had a safe needle disposal. There were 64.15% of the communities whose CHRs were trained to dispose of used needles. A little over 1 in 5 communities (22.64%) CHRs distributed needles and only 7.55% of the communities had CHRs that asked to have a needle exchange program in their community but were met with resistance. The majority of the communities stated that their needle programming was for diabetic patients and not really needed for IV drug users.
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HIV/AIDS PROGRAMMING IN THE COMMUNITY

This programming is referred to the ways the communities provides awareness to their communities about HIV/AIDS. Many of the communities have the basic information available such as pamphlets, posters and condoms. Others have more information such as DVDs, workshops, and condom kits distributed at events. There were many successful events shared at the meetings including various groups getting together for crafts and cultural arts to discuss health topics including HIV/AIDS. The HIV/AIDS services the communities mostly provide is blood screening and referrals. Some do provide palliative and basic care but mostly the hospitals or health units are accessed for services. There are 50 of 53 communities (94.34%) distributing condoms through their health offices and only 23 (43.40%) through their band offices. Some health offices are in the same building as the band office. Education and training about the use of condoms is provided by 39 communities (73.58%) which is good. There were 3 of 53 communities (5.66%) participating in a harm reduction research project. The five research questions that we asked hardly provided any information to report other than some communities felt that they were researched to death. One community does have an ethical committee that reviews request for research participation.
RECOMMENDATIONS AND PRACTICES

This report also presents a series of recommendations for consideration. These are compiled and presented by the audience that is most importantly and most closely involved in addressing the issue or implementing the action contained in each recommendation. There are three levels of recommendations noted here and presented in more depth in the concluding section.
FOR FEDERAL, PROVINCIAL, AND REGIONAL FUNDING AUTHORITIES

To increase HIV Funding to First Nation Communities based on a weighted scale. o To factor it on community needs remoteness and population. To increase patient travel rates o Many community members are skipping their appointments. To increase funding for education and training in the communities o The majority of the communities expressed this need. To build three treatment centres in the North o They could be located in Terrace, Prince George and Fort St. John. They can be for general treatment and palliative care and include HIV/AIDS services as part of the program. This would increase access to services and community support for Aboriginal people. To provide more physicians and nurses specialized in HIV/AIDS Care o There were some communities that identified racism and discrimination from local health units for HIV/AIDS services, again this would increase access to services. To provide Pre- and Post-Test Counselling Training o There was a series of training provided in 2009 but it was for one day, the communities are requesting for more and that it include follow-up training. To provide the communities support to develop HIV/AIDS programming o The communities are not welcoming home their own people who are infected with HIV/AIDS because they do not have a support program. Many suggested a strategic action plan. 987 4th Avenue, Prince George, BC V2L 3H7 Page 9
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To provide communities with an HIV/AIDS Workshop in a Box and other resources o This was a common need identified for health offices to have access to a package that they can order that has all of the workshop material, guidelines and practices in a box. o There is also a need for a directory of Aboriginal HIV/AIDS programs and resources. To provide support to smaller communities to write proposals for call for grants. To provide more harm reduction programs and support to the Communities o The communities want to get healthy and stay healthy with harm reduction activities. To provide harm reduction programs for Youth o There is an increase in drug and alcohol abuse, sexual abuse, and overall abuse including: gang rapes, gang rapes used as bullying tools, girls getting drugged and raped, teen pregnancies, and youth suicides. To provide funding for a Youth Coordinator or Youth Worker in each community o Only 1 in 5 communities (20%) have a youth council and it has been attributed to lack of interest by the youth to organize. The communities have had more success reaching the youth through youth coordinators or workers to help plan and facilitate activities. To provide Youth Train-the-Trainers training in the north, especially in the remote communities o Many of the communities requested that more training opportunities be made available, especially if they were regional as the youth like to network with other youth. To make cultural sensitivity training mandatory for Northern Health professionals o There is still racism, discrimination and lack of understanding experienced by community members by the NH professionals.
FOR FIRST NATION LEADERSHIP AND COMMUNITIES IN NORTHERN BC

To get the knowledge on HIV/AIDS to the Leaders o If the leaders understand and know about HIV/AIDS then they can reassure and support their communities to learn about it as well. The health offices need the leaders to understand the disease so they can develop adequate programming. To provide support in the communities for HIV/AIDS programming o Some communities have developed innovative ways to get their community members to learn about HIV/AIDS. Networking and finding out what other communities are doing is a good way to get ideas for your own community. To provide support in the communities for harm reduction programs o Many of the communities that faced financial cutbacks found that volunteerism was the key to successful events. To incorporate HIV/AIDS education and awareness in cultural practices o Some communities were successful to use cultural practices to teach about HIV/AIDS under sexual health and harm reduction such as sharing circles and craft groups. Other suggestions was to target elders and aunties to learn as they are key people who can have great influence in the community.
FOR INDIVIDUALS
To not be afraid to learn about HIV/AIDS o There are many resources to learn and it is preventable like any other disease.
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PROJECT HISTORY AND BACKGROUND PROJECT CONTEXT

In 2009 we obtained targeted funding for the Northern Health region which includes the NW, the NI, and the NE. The estimated population as of May 2010 is about 49,000 First Nations.1 The populations include on-reserve and off-reserve, and other members from other First Nation reserves. Northern Healths population of 85,000 is from 2005 statistics and includes First Nations, Metis and Inuit as well as urban Aboriginals. We were successful to meet 100% of the NW communities (27). We visited 90.48% of the NI communities (19). The two that we were not able to visit include: Nakazdli First Nation and Nazko First Nation. Lastly we visited 100% of the NE communities (7). We visited the First Nation communities; we did not visit the Aboriginal organizations as we mainly wanted to focus on the First Nations. Overall we visited 53 of the 55 First Nation communities (96.36%) within the Northern Health region. Additionally we have included a First Nation community in the Yukon Territory simply because it is the other half of one of the BC First Nation communities. There were 152 participants during Phase I of which 74 were Health Staff(48.68%), 18 were Chief and Council (11.84%) and approximately 19 were Youth (12.5%). During Phase II there were 100 participants of which 55 were Health Staff (55%), 14 were Chief and Council (14%) and 15 were Youth (15%). The grand total of participants was 252 participants of which 129 were Health Staff (51.19%), 32 were Chief and Council (12.70%) and 34 were Youth (13.49%). The North West area goes as far North as the Alaska Highway near Whitehorse, YT and as far south as the Queen Charlotte Islands and as far east as Houston, BC. The Northern Interior goes as far north as the Ingenika area which includes Kwadacha First Nations and Tsay Keh Dene, as far west as Houston, BC and as far south as the Quesnel area and as far east as McLeod Lake Indian Band. The North East region is as far west as the Chetwyd area and as far north as the Fort Nelson area and as far east as the Dawson Creek area.
The populations were taken from the DIA website of First Nation profiles in http://pse5-esd5.aincinac.gc.ca/fnp/Main/index.aspx?lang=eng. The totals were taken specifically in May 2010.
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PROJECT BACKGROUND HISTORY OF PROJECT

The Northern BC Aboriginal HIV/AIDS Task Force Chair Emma Palmantier facilitated five regional consultation sessions in April 2007. At that time the communities asked for the Task Forces involvement and assistance to develop an HIV plan in the communities. A research grant application was submitted to the Canadian Institutes of Health Research (CIHR) but was unsuccessful. Finally near the end of the fiscal period of 2008/2009 the Task Force obtained a grant from the Northern Health Authority. We were able to proceed with the project at the beginning of the fiscal year of 2009/2010. Before we could proceed with the project we had to wrap up our other projects including the Youth and Chiefs Forum in July 2009 and the Youth Video Project in August 2009. Our first visit was in the North West with the Dease River First Nation, Good Hope Lake, BC in September 2009. Our last visit was in the Northern Interior with the Lheidli Tenneh First Nation in October 2010.
PURPOSE OF THE PROJECT

The purpose of the project was to meet, network and find out where everyone was at with their HIV/AIDS Programming in their communities. More importantly to better advocate for programs and services to meet the needs of the Northern communities. The Task Force has been in existence since 2005 and its five year mandate has passed. We are looking to determine the next steps and work with the First Nations leaders to renew, revise or provide us with a mandate.
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REGIONAL STATISTICAL ANALYSIS

One of the common requests by the community leaders is the exact number of people in their community that have HIV. The answer is unclear as Northern Health only keeps track of the newly reported cases of HIV/AIDS vs. the actual number of Aboriginal people right now that are infected. Our office is constantly asked for the exact number per community that have HIV and we cannot disclose this as it will infringe upon the patients confidentiality. This is a hot subject and is further discussed in the Project Results under the Leadership and Community support section. Figure 1: A 3-Yr Comparison of Newly Infected HIV Cases in the NW by Ethnicity 14 12 10 8 6 4 2 0 2007 2008 2009 1 3 4 6 7 3 6 9 Non-Aboriginal Aboriginal Total 13 A three year analysis of the number of people infected in the North West is shown in Figure 1. The regional statistical data is taken from the Northern Healths Fall/Winter 2010 HIV Update.2 In 2007 there was 3 Aboriginal people newly infected with HIV which is 75% from the total of 4. In 2008 there was 7 Aboriginal people which is over half (53.85%) of the 13 total. In 2009 there were 6 Aboriginal people which is 2/3 (66.67%) of the 9 total. This is clearly an indication of how Aboriginal people are over-represented.
Figure 2: A 3-Yr Comparison of Newly Infected HIV

Cases in the NI by Ethnicity
25 20 15 10 5 0
23 16 10 7 3 7 9 16 Non-Aboriginal 7 Aboriginal Total
2007
2008
2009
The same analysis in the NI is shown in Figure 2 which demonstrates that Aboriginal people are significantly higher in 2007 and 2008. In 2007 there was 16 Aboriginal people infected which is over 2/3 (69.57%) of the 23 people total. In 2008 there was 7 Aboriginal which is more than 2/3 (70%) of the total of 10 people infected. In 2009 there were 7 Aboriginal people which were 43.75% from the total of 16 people that year.
The following are the NE numbers: in 2007 zero Aboriginal people were newly diagnosed with HIV which is 0% from a total of 1 person. In 2008 zero Aboriginal people were diagnosed which is 0% of 1 person. In 2009 zero people out of two totals were Aboriginal (0.00%). As explained earlier this is only new cases and does not represent how many people are infected. For example when the Task Force spoke to people in the NE communities we were told that there are First Nations who have HIV who were diagnosed. A graphical representation was not helpful as it looks confusing because of the zero Aboriginal participants for all three years.
http://www.northernhealth.ca/Portals/0/HIV_update_-_Nov_29.pdf pages 9-10 987 4th Avenue, Prince George, BC V2L 3H7 Page 13
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FNIH HIV FUNDING ALLOCATION EXPLAINED

Although the FNIH funding is going to be managed by First Nations; we did get an explanation of their formula. When the funding was first available to the communities the BC FNIH were required to get proposals from the communities to access the funds. However the communities were not ready yet so rather than sending the $200,000 back to Ottawa the decision was made to allocate to all 200 First Nations by population. The funding for 2011/2012 is explained as follows: Aboriginal HIV/AIDS Service Organizations* BC First Nation Communities Total Initial Budget Initial Budget Additional Monies Total Budget $963,820 200,000 1,163,985 $1,163,985 333,000 1,496,985
*The Aboriginal HIV/AIDS Service Organizations included: The Northern BC Aboriginal HIV/AIDS Task Force, Red Road Society, Chee Mamuk and Healing Our Spirit.
PROJECT DESCRIPTION PROJECT OBJECTIVES

The first objective was to meet the First Nations leaders in their traditional communities not their urban offices. One of the reasons the Chair felt that it was important is because it is more personal and better for the communities to describe their needs in their territory. Another reason is that a lot of government officials do not meet people in their communities and do not take the time to visit and get to know them. The second objective was to provide an update to the communities about the Task Force and its activities. The Task Force has been in existence for more than six years and it has been active providing education and awareness training sessions, meetings, forums, and other projects for communities, health staff and youth. Much of the additional work done by the Task Force is dependent on proposals. The third objective is to identify the issues from the communities so that we could advocate and liaise with the government authorities to help improve access to services. One of the advantages of going out to the communities in their traditional territory is that it is easier for the community health staff to identify the issues and for us to understand what they mean. For example in most of the First Nations surrounding the Prince Rupert area; the community members do not have their own private vehicles because they are not able to bring them on the ferry to their community. The fourth objective is to develop an action plan with the First Nation leaders vs. just a report that might end up on peoples desks and not acted upon by the First Nations leaders or government programs and services. The Chair made a recommendation to the Task Force to host a Northern Leadership Forum in the spring of 2012. One of the purposes of the forum is to develop the recommendations from the communities and put it into an action plan.
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PROJECT ORGANIZATION NORTHERN BC ABORIGINAL HIV/AIDS TASK FORCE STAFF

Emma Palmantier, Chair has been with the Task Force for over five years and served as Chief of Lake Babine nation for three terms. She is the main negotiator of the HIV/AIDS Task Force. She manages the staff and writes proposals and represents the North in various committees. Her various roles include President of the Prince George Native Friendship Centre, and a member of the following committees: RCMP Aboriginal Policing Commanding Officers Aboriginal Advisory Committee (COAAC), STOP HIV/AIDS Leadership Provincial Group, the Northern Health Blood Borne Pathogens Working Group. She is also on the national board for the Canadian Aboriginal AIDS Network (CAAN) as their northern representative. Colette Plasway, Program Coordinator has been with the Task Force for over three years. She provides assistance to the Task Force Chair to manage the budget, staff contracts, and overall project management. She helps the office write proposals and is the main person for report writing different projects and ensures that the funding is spent within the terms of the contract. She has completed three years towards her BComm degree. She has just recently joined the provincial Renewing Our Response committee. She was previously employed with Northern Health as their Aboriginal Program Coordinator for five years managing both the Community Program and Aboriginal Health Programs (AHIP). Bonnie Cahoose, Administrative Assistant was hired in July 2011 to replace Helen. She provides assistance to the Task Force to liaise and organize the events and administration. She has her Associate Degree in Education and has completed four years towards her BSw degree. She is from the Ulkatcho First Nations and served three terms as their Band Councillor.
Helen Roberts, Former Administrative Assistant was with the Task Force for over three years and for the duration of this project. She was very efficient negotiating our travel and meeting arrangements with the communities. She developed itineraries with phone numbers so we could communicate with the health offices if we were delayed. She kept track of our expenses and developed a table to help us keep within our budget. She has accepted another job with our host agency but still lets us access her organizational memory of the Task Force.
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CONSULTANTS
Dr. Theresa Healy, Regional Manager: of the Healthy Community Development at Northern Health and Adjunct Professor at UNBC with the School of Environmental Planning, was consulted regarding the work of data collection and writing of this report. She loaned her considerable expertise with Qualitative Research to the methodology and qualitative data work of this report. She also offered her assistance with editing the report and, whenever possible, the development and analysis of graphs to represent critical elements in the data. Due to her work schedule she has resigned from the Task Force and will be very much missed. Tanis Hampe, Regional Director: of the Research and Evaluation program at Northern Health, provided assistance with reviewing the project survey, methodology and ethical issues. Carrier Sekani Family Services: is the host agency but also provided some indirect assistance to the project. While visiting the communities both the Chair and the Program Coordinator received information on personal and community issues that were hard to deal with. The Carrier Sekani Family Services offered their Employee Assistance-type of program where the staff could have access to a professional counsellor to debrief and work out how to deal with the information that was collected in a positive manner.
PROJECT STAKEHOLDERS FIRST NATIONS COMMUNITIES

The Northern BC Aboriginal HIV/AIDS Task Force received its mandate from 66 First Nation communities in response to the increased rate of HIV/AIDS infections amongst First Nations people in Northern BC. The Task Forces regions crosses two jurisdictional BC Ministry of Health Boundaries: the Northern Health and the Interior Health Authority. The Northern Health Region includes the North West, Northern Interior and the North East and the Williams Lake area includes 11 First Nations that are as far south as the 100 Mile House region. When the regional chiefs met they gave us this mandate to include the Williams Lake region.
HIV/AIDS TASK FORCE

The Northern BC HIV/AIDS Task Force consist of 25 members which includes representatives from Moricetown, Saulteau First Nation, the Prince George Elders Dakelth Society, an Inuit Community member, McLeod Lake Indian Band, and Nakazdli First Nation. The First Nations Youth representatives are from Saulteau First Nations, Iskut, Moricetown, and one is vacant. The government and program representatives are from Northern Health, First Nations Inuit Health (FNIH), BC Ministry of Health, BC Ministry of Children and Family Services (MCFD), Public Health Agency of Canada (PHAC), four Aboriginal organizations including Positive Living North, Chee Mamuk BCCDC, Prince George Native Friendship Centre, Healing Our Spirit, and Carrier Sekani Family Services. The RCMP seat is currently vacant.
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PROJECT ACTIVITIES
Once the funding was confirmed for the Project the Program Coordinator developed a survey to use for the project. The Task Forces Research and Evaluation Working Group reviewed and finalized the community visit tool. When the first few surveys were done she developed an access database to enter the survey results. Once the funding was confirmed the Administrative Assistant sent out letters requesting for meetings to the First Nation communities. She also made follow-up calls with the health offices to negotiate the logistics of the meeting. When the communities were contacted the purpose of the visit was explained and the date was determined based on the availability of the community. We were looking for participation from the Chief and Council, Health Directors, CHRs, Youth Workers/Coordinators, community members and youth. When we first started the project one of the communities requested a poster to help them with recruiting community members to attend the visit. So the Administrative Assistant developed a poster template so that communities could easily customize it and enter the date and location of the visit. When we were out in the communities we did see some of these posters posted which made us feel welcome. The majority of the health offices assisted us by inviting their Chief, Councillors and community members to the meetings. In some instances the Health office also provided some assistance with travel arrangements such as suggesting good places to stay for bed and breakfast or booking us into the community hostel.
DATA COLLECTION AND COLLATION

The Program Coordinator developed an MS Access database for the project which included all of the information from the 53 First Nation communities. We updated our contact files and this was the easiest way to produce a report with band and health office information. All of the data collected from the surveys were entered and produced a spreadsheet. The Program Coordinator met with Tanis Hampe, Regional Director at Northern Health to review the data collected and provide an ethical review of the project. She went through an ethical survey and she determined that this is not a formal research project. Her advice and support were taken, particularly regarding the representation of the data for the final report. She recommended, in response to a crucial question regarding the withholding of data, that some data in certain tables should be excluded because of risks of infringing on the communitys privacy. Where this has been done a note on data reported as aggregate is made.
COMMUNITY VISIT PHASE I

The Chair and the Program Coordinator visited 25 communities which was 152 people in total from September 2009 to March 31, 2010. We attempted to visit the communities earlier but a lot of the communities and Health Canada were busy with the H1N1 virus. It was also hard to visit communities during the summer months because of the harvesting season. We concentrated on visiting those communities that were the most remote and could see us before the snow fell in the fall of 2009. Then whatever communities we could see in the winter months were those along Highway 16 which is fairly well kept. See Appendix 1: Schedule of Community Visits During Phase 1.
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COMMUNITY VISIT PHASE II

From April 2010 to October 2010 the Task Force visited the remaining 28 communities which was 100 people for a grand total of 252 participants. A special note has to be made about the Nazko First Nations visit, the Chair was scheduled to visit the community however there was a death in the community which resulted in a cancellation of the appointment. The Chair visited the community regardless and took a picture of the health trailer and got to speak to the Mental Health Worker there. Our office was not able to schedule any other appointments to do the survey unfortunately. During the summer months of 2010 the Chair mainly saw the North East and some Northern Interior communities as the Program Coordinator had to write some reports to funders that were overdue. See Appendix 2: Schedule of Community Visits During Phase II.
FACE TO FACE MEETINGS

We met with either the Health Director or CHRs and made sure to include community members if they were interested. The total number of participants was 252. At least 14 communities Chief or Council or a combination of both was able to attend our meetings. Each meeting was started with a round of introductions and then the Task Force Chair would present a Task Force update via a power point which helped tremendously by setting the tone for the meeting. The update helped the communities to realize that the issue for HIV/AIDS is relevant and communities can do something by starting the process of implementing more programs in their community.
VERIFICATION OF THE DATA

Community Letters: One of the community members asked for a letter verifying what was discussed at the meeting and also helped the Health Staff who took part in the meeting to explain what they were doing that day. These letters were not only useful for ensuring good information went forward from the sessions but also served to validate the Chair and the Program Coordinator s findings and interpretations. The letters also allowed individual follow up where members might have felt constrained by the more public nature of the consultations. Reflective Journals: both staff kept reflective journals in which they recorded observations, insights and important events as an aid to reporting on the process. Reflective Interviews: both Chair and Program coordinators conducted debriefing sessions with an external researcher as a way to balance information and observations. These sessions allowed critical incident debriefing crucial in this work where much of the material was poignant and emotionally heavy. This process allows support to avoid re- traumatizing and ensures peoples stories, even the painful ones do not get lost Professional Counselling: The information that was disclosed by the communities was of a sensitive nature and as a result both the Program Coordinator and Chair individually met professional counsellors to debrief and had an opportunity to discuss the methods for reframing the information that was disclosed. The importance of the counselling was evident because after each trip to the communities the Administrative Assistance observed that it took both staff at least two or three days to be able to concentrate at work because of the type of information that was shared at the meetings.
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Regional Consultations: Another way to connect and ensure that we are on the right track is through the regional consultation sessions. The Task Force office hosted three regional sessions. The North West was on March 2, 2011 in Prince Rupert. The North East was held on March 11, 2011 in Fort St. John. Finally the Central Interiors was held on May 12, 2011 in Prince George. Regional Leadership Forums: On February 3 and 4, 2011 we hosted a North West Leadership Forum in Prince Rupert. A Northern Interior and North East Leadership forum is scheduled on October 19 and 20, 2011 in Prince George, BC. The forums are an opportunity for the leaders to learn about HIV/AIDS as well as to get an update on the available programs, services and research from the different funding organizations and governments. The preliminary findings from the Community Engagement project were also presented to get verification of the findings and their feedback and recommendations. Northern Regional Health Caucus Session: The First Nations Health Council Northern Region invited the Chair to provide an update to the Chiefs and Health Directors on the Task Force activities for the past six years. We were given an opportunity to also present a draft resolution for their consideration. It was agreed that the Declaration signed by the Leadership Forum participants in 2005 is a living document and that the leaders provided their support for the Task Force to continue its work. The Task Force has been asked to present at the upcoming regional caucus meetings in the early New Year 2012 with a Transformative Accord package consisting of Terms of Reference, Memorandum of Understanding, etc.
STRENGTHS AND LIMITATIONS

Cultural Relevancy: One of the strengths of the process was in the face to face meetings. Investing the time to travel and meet in a relaxed and safe way encouraged a good response. Cultural Familiarity: One of the strengths of this project is the people who made the face-to-face meetings. Emma Palmantier, Chair of the Task Force is well known among the First Nations leaders as she is a former chief for three terms at the Lake Babine Nation. Colette Plasway, Program Coordinator worked with Northern Health for five years and knew many of the Health Staff already and was aware of their issues. Since the Task Force staff were already familiar with the community issues the communities did not have to invest a lot of their time explaining their situation therefore this allowed them to get right to the issues. Lack of Formal Research Structures: The purpose of the visits was to network and provide an update and also find out what the Task Force could do to provide liaison and advocacy for the First Nations communities. It is not considered to be a research project. However it could demonstrate need for an application for a formal research grant.
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PROJECT RESULTS
There were 27 North West communities (100%); 19 of 21 Northern Interior (90.48%); and 7 North East (100%) communities that participated in the project and are listed in Appendices 1 and 2. The survey results were entered both quantitatively and qualitatively. The survey consisted of 40 questions plus sub-questions; for the interest of the reader we selected 26 questions to avoid repeating some data. Each of the remaining questions will be provided as worded to the communities during the visit and who responded. We directed all questions to everyone in the meeting; we were very respectful to listen to the participants. As soon as the Chair finished providing an update on the Task Force activities the participants pretty much gave us with their HIV programming and issues immediately. The complete survey that was used is attached as Appendix 3.
LEADERSHIP AND COMMUNITY SUPPORT FOR HIV/AIDS QUESTION 1: THE NUMBER ONE RECOMMENDATION FROM THE REGIONAL CONSULTATION SESSIONS WAS THAT EACH OF THE COMMUNITIES DEVELOPS A BCR TO SUPPORT HIV/AIDS INITIATIVES. DO YOU KNOW IF YOUR BAND HAS DONE THIS, OR IS THERE HIV/AIDS PROGRAMMING IN YOUR COMMUNITY HEALTH PLAN ALREADY? IF NO WHAT DOES THE COMMUNITY NEED TO HELP MAKE THIS HAPPEN?
The responses are shown graphically in Figure 3 where 11 NW communities said yes (40.74%) and 9 in the NI (47.37%), and 3 NE communities said yes (42.86%) for a total of 23 of 53 northern communities (43.40%). Clearly, work to improve the commitment at the Band Council level is sorely needed in all regions reflected in the overall percentage that not even half of the communities have such a resolution. Figure 3: BCR Support for HIV/AIDS by Percentage 48 46 44 42 40 38 36 North West Northern North East Interior Total 40.74 42.86 43.4 47.37
QUESTION 1A: IF NO, WHAT DOES THE COMMUNITY NEED TO HELP MAKE THIS HAPPEN?

Provide awareness, cooperation Request a meeting to present to their Chief and Council. o Provide a backgrounder Write a letter to their Health Director. Write a letter with wording for one. Send a BCR template. Guidance from the Task Force would help. Health is a low priority.
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QUESTION 2: HAS THE CHIEF AND COUNCIL BEEN UPDATED AND AWARE OF THE TASK FORCE ACTIVITIES?
The responses were: 11 NW Chief and Councils were aware of the Task Force activities (40.74%), there were 19 NI leaders (73.68%), and 3 NE communities said yes (42.86%). Except for the North East these numbers arent high please keep in mind that we asked this question in 2009 before the two Leadership Forums that we hosted in February and November 2011. Additionally, the Task Force Chair presented a five-year report which updated the Northern Regional Health Caucus Session on October 19, 2011 in Prince George, BC. There were Chiefs, Band Councillors and Health Leads in attendance from all three regions to this session which was hosted by the First Nations Health Council. The Chiefs and Leaders provided their support.
QUESTION 3: IS HIV/AIDS ADDRESSED IN YOUR COMMUNITY HEALTH PLAN?

Figure 4: Communities that Have HIV Programming in their Community Health Plan by % 74 72 70 68 66 64 62 60 58 71.43 68.42 66.04 62.96 Like the BCR question it was mainly the Health Directors that knew the answer to this question. There were 17 NW communities that had HIV/AIDS in their community health plan which was 62.96%; there were 13 in the NI which is 68.42% and in the NE it was 5 which is 71.43%. There is an overall total of 35 communities of 53 that has HIV/AIDS programming in their Community Health Plan which is a little over 2/3 (66.04%) as seen in Figure 4.
While these numbers are impressive there were many communities that were in the midst of updating their plans and our visit provided encouragement for them to include HIV in them. For example in our NI Regional session in May 2011 one of the health organizations announced that they would ensure that it would be written in their updated health plan and it will add up to seven communities to the NI number.
North West Northern Interior
North East
Total
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QUESTION 4: WHAT ARE SOME OF THE BARRIERS TO HIV PREVENTION AND EDUCATION WORK THAT YOU SEE IN YOUR COMMUNITY?
All of the Health Staff were able to answer this question immediately. Lack of Funding o Formula should be based on needs and remoteness Verified by all Regional Sessions including the NW Leadership Forum in February 2011 o Lack of education, awareness, training. o Had a good HIV program but funding was cut. o Need resources to attend training and hold workshops in the communities. o Smaller communities need help with proposals as they miss out on applying for grants. o Funding cuts means program successes is dependent on volunteerism in the community. Access to health services. Verified by the three Regional Sessions in 2011. o Need more funding. o Racism and discrimination by hospitals and health units. o Pre- and Post-Test Counselling Needed Its not explained properly. Patients feel uncomfortable as they are asked a lot of personal questions such as whether or not they use IV drugs. o Lack of confidentiality. Lack of Leadership support Verified by all Consultation Sessions in 2011. o Its not a priority to them. o Health directors need more support from them to provide the HIV/AIDS programs. Lack of Community Support Verified by all Consultation Session in 2011 o Denial, fear, stigma, cautious, shame, stereotype, highly sensitive matter, taboo subject, discrimination o People with HIV are not welcomed into their communities for support. o When HIV events are planned nobody shows up o Cant call workshops HIV/AIDS, instead its called sexual health with HIV as a sub-topic. o People are coming back to their community with HIV/AIDS and they dont know what to do about it. o People dont want to talk about it - when it comes up You can hear crickets o Think its a gay disease. Many of the health staff mentioned that two-spirited community members were not accepted favourably. I.e. People immediately think they have AIDS. o It is hard to get the interest and people involved. o There is no one in the community that has HIV/AIDS. People feel safe thinking it happens down South. Harm Reduction Verified by All Consultation Sessions 2011 o See Questions 15-26 and Recommendations for more detail. o Need more funding. o Suicide rates have been increasing. o Drug and alcohol abuse is prevalent in the communities. o Lack of education and awareness training in the community. o People with HIV have problems accessing treatment for addictions. o Oil and Gas Industry More incomemore drug and alcohol use. Community population doubles and increases chance of risky behavior. 987 4th Avenue, Prince George, BC V2L 3H7 Page 22
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YouthVerified by All Consultation Sessions in 2011 o See Questions 9-14 for more detail. o Need more funding. o Drug and Alcohol Issues When youth are sober they avoid risky behaviour but not when they are under the influence. o Increase in Youth Suicides o Increased violence such as young girls are given drugs and raped, gang raped, gang rapes used as bullying tools. o Drug dealers in the communities as young as 19 years old Cultural sensitivity Verified by all three Regional Sessions in 2011 o Racism and discrimination from health professionals. o Elders dont understand HIV/AIDS because of the language barrier. o Sex is a taboo subject. o Historical family feuds. o Historical trauma from Indian Residential School and colonization. Attributes to drug and alcohol abuse, violence, sexual abuse, suicides, and poverty.
QUESTION 4: WITHOUT TELLING US NAMES, DO YOU KNOW HOW MANY PEOPLE IN YOUR COMMUNITY HAVE BEEN DIAGNOSED WITH HIV/AIDS?
The health director and staff knew the number but the community members were not able to answer this question. In the NW there were 39 people known to be HIV positive, in the NI there was 30 and in the NE it was 2 people for an overall total of 71 people that are known. On average the number of people who have HIV or AIDS is approximately 1.33 per community. There are a number of concerns with this question; Not all the health departments know the exact numbers as it is up to the patient to disclose this information. People dont want to disclose that they are positive because they dont want to be shunned in the community and be further discriminated against. Northern Health will never disclose the exact numbers to individual communities as this would infringe on the patients confidentiality. The health departments might be talking about the same person and someone might have been counted twice unintentionally. This problem might not be very significant because the number of patients were counted and agreed upon by the group; not just by one individual.
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QUESTION 5: IS YOUR COMMUNITY READY TO WELCOME COMMUNITY MEMBERS WHO ARE LIVING WITH HIV?
All people were addressed but the health staff mainly responded: There were 7 of 27 NW (25.93%) that would; 9 of 19 NI communities (38.89%) would and 3 of 7 NE communities (42.86%) said yes. The overall total is 19 of 53 communities (35.84%) would welcome HIV positive people back home. See Figure 5. Figure 5: Communities that Are Ready To Welcome HIV Community Members by % The reason we asked this question is that people who have HIV really need support and they would get healthier quicker with it. 35.84
50 40 30 20 10 0 NW NI 25.93 38.89
42.86
NE
Total
QUESTION 5A: IF NO, WHAT DOES YOUR COMMUNITY NEED TO BE ABLE TO WELCOME HOME HIV MEMBERS?
In addition to the responses from Question 4, the answers mainly reflect denial: They need more education, awareness and training in the community to hold workshops. Verified by all consultation sessions held in 2011. o Youth had more awareness than the older people in the communities. o Many of the members do not understand the disease. The health departments need leadership support. Verified by all consultation sessions. o There were a few communities that actually kicked people out for being HIV positive. o Communities would accept that someone was positive by a rumour. o Infections rates are needed before leaders will make this a priority Fear, denial, stigma, fear of ostracism. Verified by all consultation sessions. Misunderstanding about the patients right to confidentiality. o There is confusion about what the RCMP can do to a person who knowingly spreads the disease. Like any other criminal acts; the police need proof not rumours. o Again the patient does have the right to keep his/her diagnosis confidential; and many do because of their fear of being targeted for violence or abuse. Communities feel they have no support for people who have HIV. Verified by all consultation sessions.
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ACCESS TO SERVICES QUESTION 6: EACH FIRST NATION COMMUNITY RECEIVES FUNDS FROM HEALTH CANADA TO HELP THE COMMUNITIES ADDRESS HIV/AIDS; DO YOU KNOW WHAT ACTIVITIES WERE SPONSORED BY THIS FUND?
The health departments were able to answer right away: Facilitator for Workshops Provide a Workshop DVDs Books Sponsor Training Pamphlets Condom Packages Booth at Health Fair Posters
QUESTION 6A: DO YOU FEEL THAT THE AMOUNT GIVEN TO YOUR COMMUNITY WAS ADEQUATE FOR THE WORK THAT YOUR COMMUNITY WANTS TO DO?
The Health Staff responded instantly. In the NW 26 communities said no which is 96.3% felt they did not receive enough funding; in the NI all 19 communities which is 100% said no and the same with the 7 NE communities (100%). The clear consensus is that 52 of 53 communities (98.11%) felt the amount of HIV funds they receive is inadequateVerified by all Consultation Sessions in 2011.
QUESTION 7: HOW FAR DO COMMUNITY MEMBERS HAVE TO TRAVEL TO ACCESS HEALTH SERVICES IN KM?
We mostly didnt get an answer. The Program Coordinator calculated the following mileage via the internet and community websites. The average km return that the NW communities would have to travel for regular appointments was 30 km and 238 km to see a specialist.3 There were 2-5 communities that were excluded from this total because they were fly-in communities. The average km return that a NI community would have to travel for regular appointments was 167 km and 485 km to see a specialist. In the NE the average km per community was 58 km for a regular doctor return and 261 km per community for a specialist. Overall the average rate for regular appointments is 81.87 km return and 307.32 km return for specialists appointments. These figures reflect travel in vehicles; it does not show the air or ferry travel that may be required. Another consideration is that many communities are remote and the roads are not very good and therefore the travel may be a lot slower or near impossible due to weather conditions. For example the road from Telegraph Creek to Dease Lake is approximately 119 km one way; however it can easily take up to two or three hours travel time if the gravel road is muddy or slippery.
The distances were calculated return from the community to the nearest hospital for specialist travel. 987 4th Avenue, Prince George, BC V2L 3H7 Page 25
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QUESTION 8: HOW DO COMMUNITY MEMBERS MOSTLY GET TO THEIR MEDICAL APPOINTMENTS?

Mainly the Health Staff were able to answer this question. Relatives Personal Vehicles Personal Vehicles NH Connections bus Sr.s Bus Public Transportation Personal Boats MediVac Hitchhike Medical Van CHR Coast Guard Ferry Airplane Seaplane
Additional commentsVerified by all Consultation Sessions in 2011 The FNIH funding does not cover the cost of a companion to accompany the patient to their appointments. The most common comment is that many people are not making their doctors appointments because they cannot find a ride and cant afford to pay their own way. The NH Connections Bus is not utilized by some members o The schedule doesnt match their appointment. o Some members do not use it because its too boring. o They cannot bring a companion.
YOUTH QUESTION 9: DOES YOUR COMMUNITY HAVE A YOUTH COUNCIL?

The Health or Chief and Council were able to answer this question. As shown in Figure 6 there were 8 NW communities that have a Youth Council which is just over a quarter (29.63%) out of 27. There were 2 NI communities that do which are 10% out of 19. There was one NE community which is 14.29% from a total of 7 communities. Overall there were 11 out of 53 communities that have a Youth Council which is 20.75%. Figure 6: Regional Comparison of Communities The comments made by those communities that with Youth Councils by % did not have a Youth Council were: 35 They were just about to set one up at 29.63 30 the time of our visit. 25 Attempts were made to get one going 20 but the Youth did not show interest or 14.29 14.29 wanted to volunteer. 15 10 Many of the young adults volunteer 10 their time to work with the Youth. In 5 one community one of the Band 0 Councillors was actively involved with NW NI NE Total Youth Programming.
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QUESTION 10: HAVE THE YOUTH ASKED THE HEALTH OFFICE QUESTIONS ABOUT HIV/AIDS AND PREVENTION, OR EDUCATION ABOUT IT?
The health staff mainly responded. There were 10 NW communities out of 27 (37.04%) which had their Youth approach them for their questions. In the NI 3 out of 19 communities (15.79%) had interested Youth and in the NE 5 out of 7 (71.43%). Overall there was just over 1/3 (33.96%) interest shown by the Youth about HIV/AIDS questions to the health departments. See Figure 7. Figure 7: Comparison of Community Health Departments Approached by Youth by % 80 60 40 20 0 37.04 15.79 33.96 71.43
QUESTION 10A: IF NOT WHO TO THEY GO TO FOR HEALTH QUESTIONS?
NW
NI
NE
Total
Of those Health Departments that were not approached by their youth, they provided the following people: Community Health Nurse Teacher Doctors Nurses Band Councillor Peers Parents Depends who they are comfortable with. The school plays a big part in HIV/AIDS awareness. The Health Centre did workshops with the Youth. They dont because they are afraid of being judged.
QUESTION 11: WOULD THE YOUTH BE INTERESTED IN PARTICIPATING IN EDUCATION AND TRAINING REGARDING HIV/AIDS EDUCATION, AWARENESS, AND PREVENTION?
The Health staff for the most part were able to answer this question, some did not know. In the NW 23 out of 27 community youth were interested in training (81.48%), in the NI 17 out of 19 communities youth would (94.44%) and in the NE 5 out 7 community youth would go to training (71.43%). Overall there was 45 out of 53 community youth (84.91%) that would be interested in HIV/AIDS training.
QUESTION 11A: IF YES, WHAT WOULD THEY BE INTERESTED IN?

Generally the Youth would be interested in more education, prevention and awareness about HIV/AIDS. Additionally some of the youth would be interested in: Making the right choices, healthy relationships and sexuality. Peer training, Youth Train-the-Trainers Regional workshops so the Youth could network with other Youth. ATKT TrainingChee Mamuk
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QUESTION 12: IN THE HEALING OUR SPIRIT TRAINING FOR YOUTH, THE PARTICIPANTS ARE TAUGHT TO THINK ABOUT HOW THEY CAN RESPECT THEMSELVES AND MAKE BOUNDARIES FOR THEM TO KEEP SAFE. DO THE YOUTH HAVE AN ESTABLISHED BOUNDARY THAT THEY ARE TAUGHT TO HELP GUIDE THEM WHEN MAKING DECISIONS TO ENGAGE IN SEXUAL ACTIVITIES?
The Program Coordinator further explained this question to the participants by saying that we were looking to find out if the Youth were taught how to respect themselves when they choose to engage in sexual activities. Many of the Health Staff were able to answer this question immediately. This question is complicated and brought up many Youth issues. There were 18 of 27 NW communitys Youth (66.67%) that were taught how to respect themselves; there were 9 of 19 NI communitys Youth (47.37%) were taught boundaries and in the NE 3 of 7 community Youth (42.86%) were provided the knowledge. The overall total is 30 community Youth out of 53 (56.60%) communities.
QUESTION 12A: IF NO, WHAT CAN THE TASK FORCE DO TO HELP?

These were the requests for Task Force helpVerified by all Consultation Sessions in 2011 More Youth Train-the-Trainers Youth Conference Identify funders and facilitators for workshops. Get the Youth Council involved. Advocate for this to be part of the school curriculum. Identify funds for Youth Workers Have more Healing Our Spirit training.
Drug and Alcohol IssuesVerified by all Consultation Sessions When the Youth are sober they respect themselves but it all goes out the window when they are under the influence of drugs or alcohol. Young girls are given drugs, raped or gang raped in their communities. The rapes are used as a bullying tool by people to get their own way. Drug dealers in their community are as young as 19 years old. Community IssuesVerified by all Consultation Sessions Parents get offended if someone tells them to mind their children so each parent is to mind their own. Some parents have a hard time talking with their kids about healthy sexuality. Theres a lot of work that needs to be done to teach the Youth about it. Sexual abuse is a problem. When the health office tries to teach the young people about sex their parents get involved and stop it. One community held a STI workshops and it was terrible to get the youth to listen to the material being presented. Increased teen pregnancies. Increased youth suicides.
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QUESTION 13: DO THE YOUTH HAVE ANY PROGRAMS TO HELP THEM WITH THEIR HARM REDUCTION PERSONAL GOALS?
The Health departments and Youth workers were able to answer this question. There were 12 out of 27 NW communities (44.44%) that have Youth Harm Reduction programs, 12 of 19 NI communities did (63.16%) and 4 out of 7 NE communities (57.14%) that did. The overall total is 28 of 53 communities (52.83%) had harm reduction activities targeted for their Youth.
QUESTION 13A: IF NO, WHAT CAN THE TASK FORCE DO TO HELP?

Advocate for more funding for youth workers, youth centres, and more youth programs. Need trained youth counsellors Would like more education on traditional medicines. This is a hot topic as it ends up being a political debate and the issue of Youth programming is therefore not resolved. Would like advocacy for funding a youth centre and youth programs.
QUESTION 14: DO THE YOUTH ACCESS THE SERVICES OFFERED BY THE HEALTH OFFICE?
As expected the Health department was able to answer this question. There were 10 of 27 NW communities (37.04%) that said yes, 12 of 19 NI communities (63.19%) whose health departments were utilized and 7 of 7 NE communities (100%) said yes. The overall total is 29 of 53 community youth (54.72%) that access services at their health offices.
QUESTION 14A: ARE THEY AFRAID OF THE LACK OF CONFIDENTIALITY

In the NW there were 16 of 27 communities (59.26%) whose youth were afraid of the lack of confidentiality in their health departments; there were 10 of 19 NI communities (52.63%) that said yes and in the NE only 1 of 7 communities (14.29%) said yes. The overall total is 27 of 53 communities (50.94%) youth are afraid of the lack of confidentiality. These figures seem to complement the previous question.
QUESTION 14B: IF NO, WHAT CAN THE TASK FORCE DO TO HELP?

Respect privacy. Huge issue. They dont see the community health clinic simply because they are not open when they come back from school; therefore they see the local Health Unit. (NH) What is confidentiality in an Aboriginal community? We all know everybodys business. How can workers reassure clients that they are not the ones breaking confidentiality when gossip goes around?
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HARM REDUCTION QUESTION 15: IS THERE ANY MENS WOMENS, YOUTH, ELDERS GROUP, DRY DANCES OR ANY INNOVATIVE WAY TO PROVIDE SOME TYPE OF HARM REDUCTION ACTIVITIES?
Any of the participants were able to answer this question. There were 22 of 27 NW communities (81.48%) that said yes, in the NI there were 11 of 19 communities (57.89%) that did and there were 5 of 7 NE communities (71.43%) that said yes. In total there were 38 of 53 communities (71.70%) that provide harm reduction activities which is just under 3/4. This is very impressive after hearing how much funding the communities receive. Here are the Harm Reduction activities that the communities provide: Youth Group Mens Group Parenting Group Elders Group Dry Dances Canoe Paddler Sharing Circle Sobriety Day Baseball All Native Tourney Kits Floor Hockey Sewing Group Drumming, Singing, Dance Group Doig Days Annual Events Traditional Tea Dance Life skills Drum Making Youth Group Music Womens Group Grad Dinner/Dance Basketball Beading AA Group Girls Group Luncheons Canoe Journey Elders Lunch Martial Arts Recreation Centre Movie Night Homework Night Community Health Night Natl Addiction Week Pre-Natal Lunch Community Family Dance Valentines Dinner Halloween Christmas Volleyball Community Picnic Community Dinner Old Times Group Girls Group Elders Tea Community Garden Cultural Summer Camp
QUESTION 17: DOES THE COMMUNITY HAVE A SAFE NEEDLE DISPOSAL FOR USED NEEDLES AVAILABLE FOR THE COMMUNITY?
For questions 17-20 the Health office staff were the main ones to provide the answers. There were 13 of 27 NW communities (48.15%) that said yes; 7 of 19 NI communities (36.84%) said yes; and 4 of 7 NE communities (57.14%) said yes. The overall total is 24 of 53 communities (45.28%) have a safe disposal program for their used needles. The main use was for diabetic patients. See Figure 8.
QUESTION 18: DOES THE CHR OR CHRS HAVE TRAINING ON HOW TO SAFELY DISPOSE OF USED NEEDLES FOUND IN THE COMMUNITY?
There were 19 of 27 NW communities (70.37%) said yes; 9 of 19 NI communities (47.37%) said yes; and 6 of 7 NE communities said yes. Overall there were 34 of 53 communities (64.15%) that had trained CHRs to dispose used needles. Again the answers were for diabetic patients. For those communities that dont have a trained CHR; the CHNs handle the needles. See Figure 8.
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QUESTION 19: DOES THE CHR PROVIDE SAFE NEEDLE DISTRIBUTION FOR COMMUNITY MEMBERS?
There were 5 of 27 NW communities (18.52%) that said yes; 6 of 19 NI communities (31.58%) that do; and 0 of 7 NE communities (0.00%) that do. Overall 12 of 53 communities (22.64%) offer distribution. See Figure 8.
QUESTION 20: HAS THE CHR ASKED TO PROVIDE NEEDLE EXCHANGE BUT HAS NOT RECEIVED THE SUPPORT OF THE COMMUNITY BECAUSE THEY ARE AFRAID THAT IT MIGHT LOOK LIKE THEY ARE ENCOURAGING THE USE OF DRUGS?
In the NW 3 of 27 communities (11.11%) said yes; 1 of 19 NI communities (5.26%) do; and 0 of 7 NE communities (0.00%) said yes. Overall 4 of 53 communities (7.55%) said they do as shown in Figure 8. Many communities stated that there was no need for one as they didnt have any IV drug users. Some patients get offended. The community members bring back used needles to their health centre or workers retrieve them. Some community members volunteer and do a walk-about in the community and pick up any used needles and other paraphernalia.
Figure 8: Comparison of Needle Disposal, Training, Distribution, Exchange by % 85.71 70.37 64.15 57.14 48.15 47.37 36.84 31.58 18.52 11.11 5.26 0 NW NI NE Total 22.64 14.29 7.55 45.28 Safe Disposal CHR Trained? Distribution? Needle Exchange?
90 80 70 60 50 40 30 20 10 0
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HIV/AIDS PROGRAMMING IN THE COMMUNITY QUESTION 23: WHAT TYPES OF HIV/AIDS SERVICES OR PROGRAMS DOES THE COMMUNITY HEALTH CENTRE OFFER?
Condom Distribution Pamphlets Newsletters School Workshops Dental Dams Posters Pre-Natal Tests Blood Tests/Screening 1:1 Counselling Referrals DVDs Valentines Bags with condoms and info. Pre-and Post-Test Counselling Sexual Health Day Safe Sex
Treatment of HIV/AIDS see Question 24 Successful community events promoting HIV education and awareness: o Banana split activity A fun game that started in Nakazdli o Sexual Jeopardy or Wheel of Fortune game at Health Fairs o Traditional activities Participants talk about Health issues. Quilting and crafts for women; Drum-making and hunting for men. Promote condom use at powwows and cultural events. o Nakazdli Tupperware HIV party Its a potluck dinner where HIV is talked about. o Sex & Pizza Night The Youth invite their friends for pizza and snacks to their house and a nurse comes in and answers their questions. The Health office pays for the food. Its a series of three nights: Girls Night, Boys Night, Co-Ed Night o Cover Up Your Balls Youth posters to promote condom use at the basketball tourney What worked in the communities: o HIV/AIDS workshops Dont call it that rather sexual health or people wont attend. o Food and door prizes For Youth - iPods, food and music. o Question box at health centre; the answers are provided in a newsletter o Young adults make the posters The adults read them because it was by young people. Education and Training with facilitators from other organizations: o Chee Mamuk ATKT & Mobilizing Training o Healing Our Spirit o Positive Living North & North West o Four Directions in Whitehorse, Yukon Territory hosts an annual Youth Conference o Bloodlines in Watson Lake will facilitate workshops if requested.
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QUESTION 24: HOW DO YOUR COMMUNITY MEMBERS ACCESS HIV/AIDS SERVICES?

The health office staff mainly responded: Community Health Services o Referrals to specialists. o Basic care such as changing bandages, and assistance with medication. o Palliative Care as needed. o Confidential testing with CHN o Visiting doctor once a week, or twice a month o 1:1 Counselling o Pre-and Post-Test Counselling o Rapid HIV/AIDS Testing o Family Support Workers NH Health Units and Hospitals Aboriginal organizations who provide advocacy, support and liaison o Positive Living North o Dze LKant Friendship Society o Quesnel Tillicum Society Issues identifiedVerified by all Regional Consultation Sessions in 2011 o Nurses are transient, they are hard to build relationships with. o Having a Nurse-in-Charge increases the success rate of proposals. o Some people have learning disabilities. o Some doctors and nurses dont have time to provide counselling. o Length of getting test results in 2 weeks vs. Vancouver where it takes days. o Jurisdictional issues in the North The communities near the Yukon border face them for funding and programs. They are close to Whitehorse and Watson Lake which are in the Yukon but they are told to go to Terrace which is a 13 hour drive. o With great difficulty David Smith, Band CouncillorOld Masset Village
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QUESTION 25: ARE CONDOMS BEING DISTRIBUTED AT THE BAND OFFICE OR HEALTH OFFICE?
Figure 9: Comparison of Condom Distribution through The health office staff provided us with the Band or Health Offices by % answers. Since we asked about the Health offices and Band Offices both were entered in the database. For the band office there were 8 of 27 NW communities (29.63%) said yes; there were 12 120 of 19 NI communities (66.67%) said yes; and 3 100 94.34 92.59 94.74 100 of 7 NE (42.86%) said yes. Overall there are 23 of 53 (43.40%) northern band offices that 80 66.67 distribute condoms. See Figure 9. Band Offices 60 42.86 43.4 For the Health offices there were 25 of 27 NW Health Offices 40 29.63 (92.59%) communities that said yes; 18 of 19 20 NI communities (94.74%) said yes; and 7 of 7 NE communities (100%) said that they do. 0 Overall there are 50 of 53 communities NW NI NE Total (94.34%) that distribute condoms. See Figure 9.
QUESTION 26: IS THERE EDUCATION OR TRAINING SESSIONS ABOUT THE USE OF CONDOMS?
The health office staff were the main ones to respond. There were 20 of 27 NW communities (74.07%) that do; 14 of 19 NI communities (73.68%) said yes; and 5 of 7 NE communities (71.43%) said yes. Overall there were 39 of 53 communities (73.58%) that provide education or training about the use of condoms in the communities. One community stated that their Youth know that they can get a prescription for condoms.
RESEARCH
This section consisted of 5 questions which were hardly responded to by the communities as they are mostly too busy or do not have the resources to write proposals for it. There are a couple of communities that were participating in a harm reduction research project in the Northern Interior for Health Canada. One NW community was participating in a provincial Public Health Agency of Canada project on harm reduction. One community has a committee that reviews requests from outside agencies to participate in research.
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CONCLUSION
There was a little more than 14 northern First Nations that seemed to be doing well with their HIV/AIDS programming and well on their way based on their responses to the questions.
LEADERSHIP AND COMMUNITY SUPPORT FOR HIV/AIDS

Less than half of the communities had a BCR which specifically supports HIV/AIDS programming (43.40%) with the Northern Interior being the region with the most support at 47.37%. There is an increase in the percentage of communities that have it written into their Community Health Plan of 43.4% overall with the North East having the most at 71.43%. The main issues identified for the lack of programming included: lack of funding, access to health services, lack of leadership support, lack of community support, the need for more harm reduction programs, the need for more Youth harm reduction and training/conference opportunities and finally cultural sensitivity. Clearly the support would be increased with the leaders having the knowledge of HIV/AIDS. We asked each of the communities if they could tell us how many people they knew of that has HIV/AIDS and the average was 1.33 people per community for a total of 71 members. We then asked if their community would welcome back a person who has HIV/AIDS back into their communities and the overall average was 35.84% said they would with the NE and NI most likely at 42.86% and 38.89% respectively. The barriers identified for the communities to provide support to their HIV/AIDS members was funding, more education and training in the communities, fear/denial, and a misunderstanding of the patients right to confidentiality about being HIV positive and the lack of a strategic plan.
ACCESS TO SERVICES
The communities clearly indicated that the funding allocation from Health Canada was inadequate 98.11% overall with the NI and NE being the highest at 100%. With the small amount of money that the communities receive include paying for facilitators for workshops, DVDs, workshop expenses, books, pamphlets, condom packages, a booth at a health fair, and posters. We asked the communities how far their members have to travel to access their doctors appointments and the majority of the participants didnt answer therefore the Program Coordinator researched the information using the internet and the band websites to calculate the distances travelled. One of the first communities suggested that there were two different answers: one for regular and then another for specialist travel. The average km return for regular appointments was 81.87 km return and 307.32 km return for specialist appointments. These figures only reflect the distance travelled by road and not for air, ferry or boat travel. Another note is that most of the access road to the communities are gravelled and travel is very dependent on optimum weather conditions. For example the road to Telegraph Creek is 119 km one way but it can easily take up to 2.5 hours travel time if the gravel road is muddy or slippery. This is one of the accesses to health services challenges that the First Nation communities face when travelling to their appointments. The most common way for community members to get to their medical appointments was from their relatives, hitchhike, personal vehicles and community vans. The other travel methods included: NH Connection bus, public transportation, medical van, CHR, Coast Guard, ferry, airplane, seaplane, and personal boats. The challenges the communities face is that the FNIH funding does not even do not cover the cost of gas for someone travelling with their personal vehicles nor the costs associated with a companion to accompany the patient to their appointments. 987 4th Avenue, Prince George, BC V2L 3H7 Page 35
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YOUTH
One of five northern First Nation communities had a Youth Council at the time of our visits which is 20.75% with the NW being the highest at 29.63% the lowest being 10% the NI. The confidence that the Youth are viewed to have with their community Health clinics is overall just over 1/3 (33.96%) with the NE being the highest at 71.43% and the NI being the lowest at 15.79% and the NW a little above average at 37.04%. When we asked who the youth approach for their HIV/AIDS questions the most common answer was the CHNs and doctors and the remainder were their teachers, peers, and their parents. Since there is a lack of interest of the Youth to take on a leadership roles some of the communities have hired a Youth Coordinator/Worker to plan activities. We asked whether or not the youth would be interested more education or training on HIV/AIDS education, awareness and prevention and the overall rate was 84.91% of the 53 communities would be interested. When we asked what type of training they would participate in the responses included healthy sexuality and relationships, Youth Train-the-Trainers, and regional workshops where the youth could network with other community youth. One of the topics that the Healing Our Spirit training covers when they do their HIV/AIDS workshops is healthy sexuality and respecting themselves when making decisions to engage in sex. We asked whether the community youth were taught how to respect themselves and just over half of the 53 communities felt that their youth were taught (56.60%). The causal reasons is drug and alcohol abuse and community issues regarding parenting. A little over half of the communities have harm reduction programs to help the youth (52.83%) which the highest being the NI at 63.16% and the NE at 57.14% and the NW being the lowest at 44.44%. The main challenge the communities identified is lack of funding. The number of communitys youth that access the services offered by the Health Office is 54.72% (29) with the NE being the highest at 100% and the NW being the lowest at 37.04%. The number of youth who are afraid of the lack of confidentiality is 50.94% (27) with the NW being the highest at 59.26% and the NE being the lowest at 14.29%. An interesting comment was made by one of the communities that there needs to be an Aboriginal definition of confidentiality as there really isnt any in Aboriginal communities. Everybody knows everybody elses business and it makes it difficult for health workers to reassure their clients that they were not the ones that started the gossip in the community about their patients condition. These figures support the need for more harm reduction programs targeting youth.
HARM REDUCTION
Despite funding cutbacks an impressive number of communities offer some type of harm reduction activities. There were 71.43% that offered activities with the NW being the highest at 81.48% and the NI being the lowest at 57.89%. The most common activities included: Various Age Groups, dry events, cultural activities including dancing, drumming, singing and crafts. Some communities incorporate sharing circles with their cultural groups to encourage support. Two NW communities took it to another level by providing holistic training which included HIV/AIDS education and awareness for their canoe journey team when the participants travelled along the coast.
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HIV/AIDS PROGRAMMING IN THE COMMUNITY

The Health Offices mainly offer blood testing and referrals for specialists care as their HIV/AIDS services. There were some that offered Pre- and Post-Test Counselling and Rapid HIV/AIDS Testing. The majority of the communities stated that there was a need for more Pre- and Post-Test Counselling training for their health workers. The issues that they identified regarding the health services that they offer include that nurses are transient and therefore it is hard for communities to develop relationships with. Some doctors and nurses dont have time to provide counselling. One Old Masset Band Councillor stated that they access their health care With great difficulty.
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RECOMMENDATIONS AND PRACTICES

In addition to the survey questions the communities provided their recommendations. We also heard from the participants from the 3 regional sessions and the NW and NI/NE Leadership Forums in 2011.
FOR FEDERAL, PROVINCIAL, AND REGIONAL FUNDING AUTHORITIES

The common feedback the communities mentioned was that the funding they receive is inadequate, especially for HIV/AIDS programming.
TO INCREASE HIV FUNDING TO FIRST NATION COMMUNITIES BASED ON A WEIGHTED SCALE

Clearly the HIV funding allocation to the First Nation communities is not enough for the communities to do what they want for their programming. The Chief and Council and Health leads have suggested that the funding be based on a weighted scale which factors in needs, HIV statistics and remoteness and not population. There was a further suggestion to take it further to include urban First Nation members. The funding could include seed money for the communities to conduct a needs assessment. There were a lot of interesting comments made by the Chief and Councillors at the NW Leadership Forum that we hosted in February 2011: We are tired of being beggars in our own territories They make policies down south and expect us in the North to live with them when things are different for us. The government move quickly to take away resources but so long to move an act for funding; yet the statistics for HIV can triple overnight.
TO INCREASE PATIENT TRAVEL RATES

There were many reasons for increasing the rates. The most important reason is community members are skipping their doctor and specialists appointments because they cant afford to go. The amount of money they receive is not even enough to cover the cost of gas. So many of our people are on a fixed income and reside in a community that has no specialized physicians and clinical treatment and care. Lax Kwalaams Band Councillor Stan Dennis commented, The north is unique because of the isolation factor which makes travel costly.
TO INCREASE FUNDING FOR EDUCATION AND TRAINING IN THE COMMUNITIES.

This was another common theme identified by the communities. They dont have enough awareness and education to support their own members who have HIV/AIDS. This will help the communities to also cope with it and not just turn people away. Knowledge is empowering, was a comment we received from a participant at one of our visits. To help with costs a suggestion was made to explore using the Telehealth equipment to host teleconferencing events such as training and workshops.
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TO BUILD THREE TREATMENT CENTRES IN THE NORTH

This was suggested by the communities and supported by the NW Leaders in February 2011. They clarified that the centres be in Terrace, Prince George and Fort St. John. The centres would specialize in treatment and palliative care services which would include HIV/AIDS services, but as one of the programs and not be called HIV/AIDS clinic as this would further stigmatize the patient. People who are positive need support and education to live with the disease. A centre will help with the doctors and nurses to know more about HIV/AIDS. The Patient Liaison workers in the hospitals are already inundated with work if this centre is in place it would help when they are providing support to their patients. One of the leaders suggested that the pine beetle wood be used to build it.
TO PROVIDE MORE PHYSICIANS AND NURSES SPECIALIZED IN HIV/AIDS CARE.

There have been numerous issues raised in the communities about discrimination of patients with HIV/AIDS and refusal of services in some facilities. With more physicians and nurses this will help to increase access. There are currently two physicians who are specialized in HIV, one in the Hazelton area and the other in Prince George.
TO PROVIDE PRE- AND POST-TEST COUNSELLING TRAINING

This has been a concern in the Task Force for many years but it was echoed and supported by the communities. There has been training in the past but it was only one-day of training and the communities asked for it to be longer and include follow-up training.
TO PROVIDE THE COMMUNITIES SUPPORT TO DEVELOP HIV/AIDS PROGRAMMING

The communities said that they are not ready to welcome home a community member who has HIV/AIDS because they do not have a strategy in place to deal with them. There is need for more education and training for members to learn about the disease, especially about the patients right to confidentiality.
TO PROVIDE THE COMMUNITIES WITH AN HIV/AIDS WORKSHOP IN A BOX AND OTHER RESOURCES
This was provided by the NE Regional Session in March 2011 but it is something that the communities were wanting as well. The box could contain the teaching material, guidelines and resources to hold a workshop in the communities. Please note that the Chee Mamuk Mobilizing on HIV/AIDS Programming training participants receive something similar to this upon completion. The communities were also requesting a directory listing all of the HIV/AIDS organizations or resource people and what type of programs that they offer. Although many of the health staff may have taken HIV/AIDS train-the-trainers once they stated that they need more training since it is a complicated disease. Another observation that our office found from doing this project is that there is a high turnover of health staff in the communities. One recommendation from the NW Regional Session in March 2011 was that Northern Lights College should be approached to teach trainers for the NW communities.
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TO PROVIDE SMALLER COMMUNITIES SUPPORT FOR PROPOSAL WRITING

When we presented to the Chiefs at the Central Interior/North East Leadership Forum on October 218 & 29, 2011 they agreed on one more recommendation - that smaller communities do need support to write proposals. They miss out on grants such as the recent call for proposals from Northern Healths Imagine Grants.
TO PROVIDE MORE HARM REDUCTION PROGRAMS AND SUPPORT TO THE COMMUNITIES

One Chief commented at the NW Leadership Forum in February 2011, The reason for suicidesthe common denominator is poverty. In addition to education and training the communities need more harm reduction programs to keep people safe and healthy. Many communities provide harm reduction activities but because of funding cuts they cannot offer as much as needed and rely on volunteers in their communities to have successful events. There is a gap between the social vs. health programs that was identified for people who have HIV/AIDS. When a person who has HIV/AIDS is diagnosed and goes for treatment they are told to get their HIV looked after first. However when they go to get their HIV looked after the health programs tell them to get healthy and one way is to get their addiction treated. This is a concern especially since the health offices said that it is hard to get people who are risk of getting treated.
TO PROVIDE HARM REDUCTION PROGRAMS FOR YOUTH

The common theme we found in the communities was that the Youth were a concern because there is a lot of teen pregnancies, young girls being raped and suicides. Since many of the communities are small and are not near an urban centre there is a sore lack of activities for the youth to do and therefore they turn to drugs and alcohol. Youth suicides have increased in both the NW and NI and communities are trying to address the problem. We asked the communities whether or not the youth respected themselves when making decisions about engaging in sex. The answers varied but the most common response is that they may respect themselves when they are sober but not when they are under the influence of drugs or alcohol. Some communities may need assistance with meeting with the RCMP and start to work with issue of girls getting raped. For example one community stated that a girl got raped but the police were not that sensitive.
TO PROVIDE FUNDING TO THE COMMUNITIES FOR A YOUTH COORDINATOR OR YOUTH WORKER IN EACH COMMUNITY.
One of the recommendations made in 2007 when the Task Force Chair held regional consultation sessions is that the Youth be encouraged to get involved with the community through Youth Councils. If the youth get involved in the planning of the program activities it would be most effective. However when we asked how many Youth Councils there were in the community only 1 in 5 had one (20%). Many of the communities try to get their youth involved but there is lack of interest or nobody wants to step up and volunteer. What some communities have found to be successful is to have a Youth Worker that engage the youth and plan activities for them.
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TO PROVIDE YOUTH TRAIN-THE-TRAINERS TRAINING IN THE NORTH, ESPECIALLY IN THE REMOTE COMMUNITIES
There were many requests for Youth HIV/AIDS training in remote communities. The same recommendation was made to provide HIV/AIDS awareness, education and prevention in the schools that it be part of the school curriculum. The material should cover sexuality, HIV prevention, testing and wellness. When Youth were in workshops they liked it when it was in the city and when other nations are included as it offered an opportunity for networking.
TO MAKE CULTURAL SENSITIVITY TRAINING MANDATORY FOR NORTHERN HELATH PROFESSIONALS

Many of the community members experienced racism, discrimination and lack of understanding about the First Nation culture and practices. Health program managers need to be aware that certain communities dont collaborate with each other because of existing family feuds.
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FOR FIRST NATION LEADERSHIP AND COMMUNITIES IN NORTHERN BC

The common these in the communities is that there is not support from both the leadership and the communities for adequate HIV/AIDS programming.
TO GET THE KNOWLEDGE ON HIV/AIDS TO THE LEADERS

The Health Directors are in need of the Leadership Support when dealing with HIV/AIDS patients and related issues. The leaders are the ones that can make change on the political level and if they are not knowledgeable about the issues then there is a missed opportunity to help their own people in the community. There was a suggestion by a participant at one of our regional consultation sessions that HIV 101 training be part of the orientation that a Chief and Councillor receive. This could be a community policy when new leadership is elected. When the Task Force hosted a Mobilizing on HIV/AIDS Training in the Williams Lake area one of the health directors told us about her success story. Their Chief and Council approached her because they found out that someone had HIV/AIDS and they were asked by community members to deal with it. What they did after many meetings with the Health Director was they followed up by attending their Health Staff meetings. The leaders were able to find out what was happening on the front lines and provide their course for action. This helped immensely and soon there was community support for more HIV/AIDS programming. Another suggestion from one of the leaders in the NW was that they get a BC AFN resolution to better support and equip northern and remote communities. To take it to the next level someone thought that some Youth look to their leaders to know how to act about HIV/AIDS and they could teach students in their schools about it.
TO PROVIDE SUPPORT IN THE COMMUNITIES FOR HIV/AIDS PROGRAMMING

The communities dont know where to start when it comes to providing HIV/AIDS programming. One comment was that change has to start somewhere but will not if the community doesnt try. They have requested that they be given a strategy or action plan for HIV/AIDS programming. The communities can help advocate for their members to support people who are infected by providing more workshops and awareness materials in the clinics. Many of the communities felt that the reason for the lack of interest in HIV/AIDS is because people still think its a gay diseasewhich means there is a lot of stigma in the communities for two-spirited people. Not many people had any ideas about what to do about the stigma of gay people. Perhaps the communities could work on acknowledging that there is discrimination for gay people and that they could be sought out more for their own support and a voice on what their needs are. To work towards community members to learn not to isolate the infected person; as they need support to get healthy. One community is trying out a mentoring strategy of sending a community member to training if their health staff is too busy or do not need it. They stated that it helps them to be more accountable to the communities and provides another perspective. When staff members attend training it would help if they provide feedback to the communities to let them know why they were away. In one community they have a committee established that plans and discusses HIV/AIDS programs. The committees could consist of 1 Elder and 1 Youth to help plan the events. Elders could be encouraged to participate in HIV/AIDS workshops as they are looked on for how to act in the community. Some 987 4th Avenue, Prince George, BC V2L 3H7 Page 42
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communities plan to collaborate with neighbouring bands to help with making their programming and to get ideas about how to engage community members.
TO PROVIDE SUPPORT IN THE COMMUNITIES FOR HARM REDUCTION PROGRAMS

Many of the communities have their harm reduction activities already in place. The communities stated that because of overall program cuts a lot of their events are successful depending on volunteerism. There were various suggestions for getting the message about harm reduction and the connection with HIV/AIDS. One was to provide incentives for people who get tested for HIV/AIDS. Another was to promote awareness about HIV/AIDS at gatherings and at health fairs.
TO START EDUCATING THE CHILDREN AS YOUNG AS 5-10 YEARS OR OLDER ABOUT SEXUALITY TO HELP PROTECT THEM SEXUAL PREDATORS
Many of the regional sessions that we held in the spring of 2011 was that the children can start learning about their sexuality at a younger age. This would help with normalizing sexual health education. Two books were highly recommended by the communitiesIts my body and The Gathering Tree. One participant at a regional session suggested that perhaps someone could develop a teaching tool like Moe the Mouse for Head Start and Day Care programs.
TO INCORPORATE HIV/AIDS EDUCATION AND AWARENESS IN CULTURAL PRACTICES

This subject was found in the majority of the cities. Education for Elders was a recommendation from several regional sessions to help bring awareness in the communities and provide support for HIV/AIDS programming. Aunties are traditionally looked at for being responsible for the youth in the communities so they are also a good target group for training. In some cultural groups the community incorporates self-respect, respect for others and taking responsibility for their actions via sharing circles. These circles have been very powerful and healing.
FOR INDIVIDUALS
There were some comments about the community members learning about HIV/AIDS to increase awareness.
TO LEARN MORE ABOUT HIV/AIDS FOR YOURSELF

Even though HIV/AIDS sounds like it is hard to understand it is actually quite simple. You can only get it from and infected person through four bodily fluids: breast milk, blood, vaginal/semen fluid, and anal discharge. The best way to prevent it is to use a condom for intercourse and a dental dam/flavoured condom for oral sex.
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APPENDICES APPENDIX 1: SCHEDULE OF COMMUNITY VISITS DURING PHASE I

# 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 21 22 23 24 25 24 25 Community Dease River Band Iskut Valley Health Services Tahltan Health & Social Services Authority Kitamaat Village Council Kitselas First Nation Kitsumkalum Band Council Hagwilget Village Council Gitxsan Health Society (this will also include Glen Vowell, Gitanmaax, and Kispiox) Saulteau First Nation West Moberly Lake First Nation McLeod Lake Indian Band Tsay Keh Dene Kwadacha First Nation Fort Nelson First Nation Lake Babine Nation Burns Lake Band Gitwangak Band Council Southside Health & Wellness Centre which includes: Skin Tyee Nation, Cheslatta Carrier Nation, Nee Tahi Buhn Band Wetsuweten First Nation Saikuz First Nation Gitanyow Health Centre Gitsegukla Band Council Old Masset Village Council Skidegate Band Council Region NW NW NW NW NW NW NW NW NE NE NI NI NI NE NI NI NW Date of Visit 22-Sep-09 23-Sep-09 24-Sep-09 30-Sep-09 30-Sep-09 2-Oct-09 15-Oct-09 16-Oct-09 27-Oct-09 27-Oct-09 28-Oct-09 24-Nov-09 25-Nov-09 7-Dec-09 18-Jan-10 2-Feb-10 3-Feb-10 Male 0 0 0 0 1 0 1 1 0 0 0 0 1 2 1 0 0 Female 1 2 3 4 3 5 4 6 6 2 3 3 1 7 18 4 3 Youth Male 0 0 0 2 0 0 0 0 0 0 0 0 0 0 2 0 1 Youth Female 0 0 0 4 0 0 0 0 0 0 0 0 0 0 4 0 0 Total 1 2 3 10 4 5 5 7 6 2 3 3 2 9 25 4 4
NI
3-Feb-10
21
28
NI NI NW NW NW NW
5-Feb-10 12-Feb-10 23-Feb-10 24-Feb-10 29-Mar-10 31-Mar-10
0 0 0 2 2 1 15 9.87%
3 3 3 3 4 6 118 77.63%
0 0 0 0 0 1 7 4.61%
0 0 1 0 0 0 12 7.89%
3 3 4 5 6 8 152
Participant Count During Phase I Percentage of 152 Participants
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APPENDIX 2: SCHEDULE OF COMMUNITY VISITS DURING PHASE II

# 1 2 3 4 5 6 7 8 9 10 11 12, 13 14 15 16 17 18 19 20 21 22 23 24 25 Community Lax Kwalaams Band Metlakatla Band Council TakuRiver Tlingit First Nation Daylu Dena Council Liard First Nation Blueberry River First Nation Doig River First Nation Halfway River First Nation Prophet River First Nation Yekooche First Nation Takla Lake First Nation New Aiyansh, Gitwinksihlkw Village Governments Gingolx Village Government Laxgalts'ap Village Government Hartley Bay Village Council Gitxaala Nation (Kitkatla) Lhoosk'uz Dene (Klusklus) Lhtako Dene (Red Bluff) Esdilagh (Alexandria) Moricetown Band Nadleh Whut'en First Nation Stellat'en First Nation Tl'azt'en First Nation Lheidli T'enneh Nation Participant Count in Phase II Percentage of 100 Participants Participant Count in Phase II Phase I and II Participant Totals Percentage of 252 Participants Region NW NW NW NW NW NE NE NE NE NI NI NW NW NW NW NW NI NI NI NW NI NI NI NI Date of Visit 13-Apr-10 14-Apr-10 27-Apr-10 29-Apr-10 29-Apr-10 11-May-10 11-May-10 12-May-10 13-May-10 25-May-10 26-May-10 1-Jun-10 2-Jun-10 2-Jun-10 20-Jun-10 22-Jun-10 4-Oct-10 5-Oct-10 6-Oct-10 20-Oct-10 21-Oct-10 21-Oct-10 27-Oct-10 28-Oct-10 Male 2 0 0 0 0 0 0 0 0 4 1 0 0 0 2 0 0 0 2 0 0 0 12 0 23 23.00% 15 38 15.08% Female 5 2 3 4 3 4 1 2 2 6 3 1 2 1 2 2 2 1 2 6 4 1 2 1 62 62.00% 118 180 71.43% Youth Male 6 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 7 7.00% 7 14 5.56% Youth Female 8 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 8 8.00% 12 20 7.94% 152 252 Total 21 2 3 4 3 4 1 3 2 10 4 1 2 1 4 2 2 1 4 6 4 1 14 1 100
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APPENDIX 3: COMMUNITY ENGAGEMENT SURVEY QUESTIONS

Northern B.C. Aboriginal HIV/AIDS Task Force Carrier Sekani Family Services Host Agency Community Visit Community Readiness Project 2009/2010
Participants: We hope to hear from you about your perspective on HIV/AIDS work in your community. We want to know what is being done and what you think should be done about HIV where you live. All the information you share will be collected to help us understand community needs and HIV so we can better plan and facilitate needed service delivery to our northern communities. Date(s): Band Name:
CIN # (Task Force ID) 1) Leadership & Political Action a) The number one recommendation from the regional consultation sessions was that each of the communities develops a BCR to support HIV/AIDS initiatives. Do you know if your band has done this, or is there HIV/AIDS programming in your community health plan already? Yes No If no, what does the community need to help make this happen?
b) Each First Nation community receives funds from Health Canada to help the communities address HIV/AIDS; do you know what activities were sponsored by this fund? c) Yes No Do you feel that the amount given to your community was adequate for the work that your community wants to do? Yes No If no, what does the community need to help make this happen?
d) Is HIV/AIDS addressed in your Community Health Plan? Yes No If it is not, how does the community plan to address HIV/AIDS issue?
e) Has the Chief and Council been updated and aware of the of the Task Force activities? Yes No If no, what does the Task Force need to do to inform Chief and Council?
f)
Do you know that there is a Strategic Plan in place and that it was developed through various consultation sessions? Yes No
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2) SENSITIVE ISSUES a) Do you know of any community member right now that has HIV/AIDS or has recently passed away from it? Yes No b) Did you want to let people know where to access services? c) Yes No What are some of the barriers to HIV prevention and education work that you see in your community?
d) Without telling us any names, do you know how many people in your community have been diagnosed with HIV/AIDS?
e) Is your community ready to welcome community members who are living with HIV? Yes No If no, what does your community need to be able to welcome home HIV+ members?
3) Leadership and Political Action Youth a) Have any Youth asked for leadership training? Yes No If so were they given the opportunity to take it? Yes No b) Does your community have a Youth Council? c) Yes No Is the Youth Council active?
Yes No d) What happens to their work? (e,g, do they present to the Chief and Council?)
e) Who can we talk to on the Youth Council?
f)
Have they asked for more awareness or education about HIV/AIDS?
Yes No g) What HIV/AIDS activities has the Youth Council worked on that you know of?
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4) Education and Awareness a) Has the Health Director or CHR taken HIV/AIDS training through conferences or workshops? Yes No b) Have they asked for more awareness or education about HIV/AIDS? Yes No If no, what could the Task Force do to help?
c)
Does your Health Director or CHR have a good idea about how HIV/AIDS is spread and basic awareness about it? Yes No If no, what could the Task Force do to help?
d) Does the Health Office/Band Office have posters or brochures about HIV/AIDS awareness, education, and prevention? Yes No If no, what could the Task Force do to help? e) Are condoms being distributed at the Band Office or Health Office? Yes No If no, what could the Task Force do to help?
f)
Is there education or training sessions about the use of condoms? Yes No If no, what could the Task Force do to help?
g) Has any group or person approached the Health Office or Band Office requesting training sessions or workshops about HIV/AIDS awareness and prevention? Yes No If no, what could the Task Force do to help?
5) Education and Awareness Youth a) Is there a Youth Coordinator? Yes No b) Have the youth asked the Health Office questions about HIV/AIDS and prevention, or education about it? Yes No If not, who do they go to for health questions?
c)
Would the youth be interested in participating in education and training regarding HIV/AIDS education, awareness, and prevention? Yes No If yes, what would they be interested in
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6) Prevention, Harm Reduction, Treatment and Palliative Care a) What types of HIV/AIDS services or programs does the community health centre offer? (Request a copy of the health departments pamphlet). b) How do your community members access HIV/AIDS Services?
c)
Is there any Mens, Womens, Youth, Elders Group, Dry dances or any innovative way to provide some type of harm reduction activities?
Yes No d) Does the Community have a safe needle disposal for used needles available for the community? Yes No e) Does the CHR or CHRs have training on how to safely dispose of used needles found in the community? f) Yes No Does the CHR provide safe needle distribution for community members?
Yes No g) Has the CHR asked to provide needle exchange but has not received the support of the community because they are afraid that it might look like they are encouraging the use of drugs? Yes No h) How far do community members have to travel to access health services in km?
i)
How do community members mostly get to the medical appointments? (Community van, relatives, bus, etc.)
7) Prevention, Harm Reduction, Treatment and Palliative Care Youth a) In the Healing Our Spirit training for youth, the participants are taught to think about how they can respect themselves and make boundaries for them to keep safe. Do the Youth have an established boundary that they are taught to help guide them when making decisions to engage in sexual activities? Yes No If no, what can the task force do to help
b) Do the Youth have any programs to help them with their harm reduction personal goals? (Youth Centre, Youth Drop-In for Drug and Alcohol Counseling). Yes No If no, what can the task force do to help?
c)
Do the Youth access the services offered by the Health Office? Yes No Are they afraid of the lack of confidentiality? Yes No If no, what can the task force do to help?
Page 49
2012
8) Research and Evaluation a) Is your community presently doing any research regarding HIV/AIDS or harm reduction which can help reduce the incidence of HIV/AIDS in your community? Yes No If yes, what sort of activities?
b) The Task Force applies for research grants on a regular basis; would your community be interested in participating if we are successful in obtaining a grant? Yes No
c)
Are there any research initiatives that your community wants to undertake but do not have the resources to do so? I.e people to write the proposals or dont have the time. Yes No What sort of help do you need?
d) Has a university or education program, or a masters or PhD candidate been doing research in your community about HIV/AIDS or related issues such as harm reduction, STIs in your community? Yes No e) If yes do you know who it is and how we can contact them? f) When did they complete or will complete the research?
g) Does your community have ownership of the research data collected? Yes No
Other last comments you want us to think about:
Page 50

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We Are Not Afraid: Knowledge is Empowering

Colette Plasway, Emma Palmantier

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

MESSAGE FROM THE CHAIR

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

We Are Not Afraid: Knowledge is Empowering

LEADERSHIP AND COMMUNITY SUPPORT FOR HIV/AIDS

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

HIV/AIDS PROGRAMMING IN THE COMMUNITY

RECOMMENDATIONS AND PRACTICES

FOR FEDERAL, PROVINCIAL, AND REGIONAL FUNDING AUTHORITIES

We Are Not Afraid: Knowledge is Empowering

FOR FIRST NATION LEADERSHIP AND COMMUNITIES IN NORTHERN BC

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

PROJECT HISTORY AND BACKGROUND PROJECT CONTEXT

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

PROJECT BACKGROUND HISTORY OF PROJECT

PURPOSE OF THE PROJECT

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

REGIONAL STATISTICAL ANALYSIS

Figure 2: A 3-Yr Comparison of Newly Infected HIV

23 16 10 7 3 7 9 16 Non-Aboriginal 7 Aboriginal Total

We Are Not Afraid: Knowledge is Empowering

FNIH HIV FUNDING ALLOCATION EXPLAINED

PROJECT DESCRIPTION PROJECT OBJECTIVES

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

PROJECT ORGANIZATION NORTHERN BC ABORIGINAL HIV/AIDS TASK FORCE STAFF

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

PROJECT STAKEHOLDERS FIRST NATIONS COMMUNITIES

HIV/AIDS TASK FORCE

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

DATA COLLECTION AND COLLATION

COMMUNITY VISIT PHASE I

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

COMMUNITY VISIT PHASE II

FACE TO FACE MEETINGS

VERIFICATION OF THE DATA

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

STRENGTHS AND LIMITATIONS

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering

987 4th Avenue, Prince George, BC V2L 3H7

We Are Not Afraid: Knowledge is Empowering