Attitudes Towards Cancer in Indigenous Communities & Examining Uptake of Screening Services: The ACCESS Project

Regions: Inuvialuit Settlement Region, Gwich'in Settlement Area, Sahtu Settlement Area

Tags: health promotion, cancer

Principal Investigator: Sharma, Sangita (8)
Licence Number: 15539
Organization: Aboriginal and Global Health Research Group, University of Alberta
Licenced Year(s): 2016 2015 2014
Issued: Sep 08, 2014
Project Team: Fariba Kolahdooz (Senior Research Associate/ Co-Lead, Department of Medicine, University of Alberta), Mohammadreza Pakseresht (Senior Research Associate/ Co-Lead, Department of Medicine, University of Alberta), Carolyn Gotay (Professor, Director of Cancer Prevention Centre/ Co-Lead, School of Population and Public Health, University of British Columbia), Loic Le Marchand (Professor/ Consultant, Cancer Epidemiology Program, Hawaii Cancer Centre), Debbie DeLancey (Deputy Minister/ End User, Department of Health, NWT), Andre Corriveau (Public Health Officer/ End User, Department of Health, NWT), Tara-Leigh McHugh (Assistant Professor/ Qualitative Researcher, Physical Education & Recreation Faculty, University of Alberta), Se Lim (Research Assistant, Department of Medicine, University of Alberta), Kyoung June (David) Yi (Research Assistant, Department of Medicine, University of Alberta), Jane De Pauw (Program Manager, Department of Medicine, University of Alberta)

Objective(s): To talk to men and women in Inuvik and Fort Good Hope about peoples' knowledge, attitude and behaviors towards cancer screening and utilization of available services for three cancers (colorectal, breast and cervical).

Project Description: Cancer is the leading cause of death in the Northwest Territories (NT). Cancer screening is a test to detect cancer at earlier stages, and can increase successful treatment. Screening can also increase survival rates and prevent up to 35% of premature deaths due to cancer. Three screening programs have been established in Canada for early detection of breast, colorectal, and cervical cancers. However, utilization of cancer screening services is low in the NT.

The team will talk to men and women in Inuvik and Fort Good Hope about peoples' knowledge, attitude and behaviors towards cancer screening and utilization of available services for three cancers (colorectal, breast and cervical).

1) People could share what cancer means to them and what they think causes cancer.
2) People could share their experiences (positive and negative) with cancer in their family and community
3) Communities' opinion on the best way to prevent and/or treat cancer.
4) Communities' thoughts and attitudes to access and use of health services including cancer screening
5) Communities' suggestions for how clinics can better serve the community so the experience is more comfortable for the members.

This study is at the request of the communities and the Government of the NT (who are responsible for all healthcare in NT) who are partners in this proposal. The Deputy Minister of Health and the Chief Public Health Officer have collaborated with the Principal Investigator (PI) on many previous projects over the last eight years and were instrumental in the development of this proposal with the communities. In the development of the project, including designing the questionnaires, the team has consulted extensively with the Community Advisory Board (CAB), which is made up of Aboriginal peoples, or those who have extensive experience with Aboriginal people in Canada's North. Additionally, the research team have experience working with Northern Inuit and Inuvialuit people, specifically to develop and implement community-based interventions (Healthy Foods North).

Step 1:
A) The CAB will meet and discuss the best way to share the communities' thoughts and concerns about cancer screening and improving health care services. The CAB will advise the team about the cultural-appropriateness of the project. The team have visited Inuvik and Fort Good Hope and met with the Fort Good Hope Band Council, the Inuvialuit Regional Corporation and Gwich’in Tribal Council to talk about the project. The team and the community members and representatives talked about working together on this project.
B) The team will train local community members to help with the study and data collection and will be certified to ensure all data are comparable.
C) Key informant interviews: To obtain feedback from key stakeholders or community members regarding barriers and opportunities for the community to participate in cancer screening programs. With the participants' permission, all the information will be collected by note taking method.

Step 2:
If interested, all women 20 to 74 years old and men 50 to 74 years living for more than 6 months in Inuvik or Fort Good Hope will be invited to take part. People who have or had colorectal, breast or cervical cancer can also take part.

Recruitment/Data Collection:
CAB will help the team make and spread out posters telling the community about the project. CAB members will ask their family and friends to take part in the study. The team will walk from house to house while they are in the community and ask people to answer the questions and talk with us. If no one is home after three visits, the team will not go to the house again. The project hopes to have 285 people from Inuvik and 115 from Fort Good Hope participate. Participants are given the choice of completing the questionnaires in either English or their local language. The interviews will be conducted by a trained member of the community to eliminate any language barriers. The interviews may be conducted in the community center or at the participants' home, or any convenient and confidential location. If a community member travels to talk to a study team member, the team will pay for their travel costs.

The CAB will consist of local healthcare professionals, community-staff, Indigenous organization representatives, stakeholders, key community members and Elders who will provide advice and insight on all aspects of the information gathering. The CAB will ensure cultural appropriateness of the data collection methods and is vital to the success of the program. The focus will be on building a trusted network of partners, establishing organizational capacity and establishing the scope of health related issues related to early detection of cancer. The CAB support and involvement is essential for capacity building and for successful knowledge translation to the communities and policy makers. The CAB will provide feedback on all data collection materials developed and guide on appropriate language for each community’s material. Any interested person can be part of the board as well as all key community leaders, including those who have previously participated in our community advisory boards. The team will train and certify local community members to help with the study and data collection.

Key informant interviews will be conducted to obtain feedback from key stakeholders or community members living in the community. Key informants will ensure that the needs and concerns of the community about cancer screening services are identified.

In October 2013, the team travelled twice from Edmonton to Fort Good Hope and Inuvik to discuss the project with community members and representatives from Inuvik and the Fort Good Hope Band Council. During the first trip the team introduced the overall objectives of the project and asked if the communities would be interested in participating in the project. After receiving positive response and feedback, the team again travelled from Edmonton to organize a feast and meet with the communities to discuss further details on the project and future steps. During the trips to Fort Good Hope, the team participated in a call-in-show to the local radio station. Local people were able to telephone the radio station and ask questions of the team members regarding the project and any other questions about cancer and health.

The team has developed an informative poster showing different parts of the human body and outlining where cancer can occur. The communities are working on translating the poster into local languages.

Once the results are ready the study team will travel to share initial findings with the CABs, community members of Fort Good Hope and Inuvik, Fort Good Hope Band Council, the Inuvialuit Regional Corporation, Gwich’in Tribal Council, Aurora Research Institute and Sahtu Health & Social Services. In October 2015 the team will travel to present all final results and data. A draft report based on the findings will be prepared and presented to all previously mentioned groups. Based on input from everyone, a final report and presentation will be prepared. Community members will be involved in the preparation and presentation of the findings and will be invited to Edmonton to work with the team to prepare the final report.

The final hard-copy report and oral presentation will be shown at the local community meeting place and everyone in the community will be invited. Team and trained community members will facilitate the presentations. The team will also give the hard-copy report to the CABS, the community members of Fort Good Hope and Inuvik, Fort Good Hope Band Council, the Inuvialuit Regional Corporation, Gwich’in Tribal Council, Aurora Research Institute and Sahtu Health & Social Services.

The fieldwork for this study will be conducted from September 6, 2014 to December 31, 2014.