An Examination of the Perspectives and Experiences of Aboriginal Elders and the Educational Needs of their Community Caregivers in Kenora and Rainy River Districts
 

Project Summary 
                                   
Goals/Objectives
 
To examine two First Nations:
- Level of awareness and understanding of palliative care
- Community values and beliefs related to death and dying
- Perceived access to palliative care resources
 
The purpose of this project is to explore Aboriginal communities’ current levels of awareness and understanding of Palliative Care and their access to Palliative Care resources within First Nations communities. The project will seek to understand:
1.      community beliefs and values related to death and dying,
2.      the preferred place for end-of-life care, and
3.      the educational needs of caregivers in First Nations Communities.
 
The outcome of the project will be a summary report with recommendations for future educational programs and services, and a series of educational workshops delivered in each of the 13 participating First Nations Communities.

For more information contact:
 
Principal Investigator:          
Mary Lou Kelley, MSW, PhD, Associate Professor
School of Social Work, Lakehead University
807-343-8617
mlkelley@lakeheadu.ca
 
Co-Investigator:    
Holly Prince, MSW, Project Coordinator
School of Social Work, Lakehead University
807-766-7204
hladouce@lakeheadu.ca

Methodology
 
This project is being conducted in thirteen First Nations Communities in the Kenora and Rainy River Districts. 

Kenora District	Rainy River District
Grassy Narrows Wabaseemoong Ochiichagwe’babigo’ining (Dalles) Obashkaandagaang (Washagamis Bay) Iskatewizaagegan #39 (Shoal Lake #39) Shoal Lake #40 Naotkamegwanning (Whitefish Bay)	Seine River Nicickousemenecaning                          Couchiching Naicatchewenin Stanjikoming Rainy River First Nations

 
Phase One: Data Collection and Analysis (May – December 2005)
 
Phase one of the project is a needs assessment: Quantitative and qualitative data will be collected through surveys and interviews in each community by a trained First Nations community project assistant hired for this project. The development of the surveys and interview questions has been done in collaboration with the team of project advisors.
 
Community meetings were scheduled in July 2005 to meet with representatives from the 13 identified First Nation communities to explain the project and to develop rapport with the project assistants and the community leaders and caregivers. Approximately 15-20 members from each community were identified in these meetings to participate in the survey using a key informants approach to qualitative research. These participants represented the following groups: Chief and Council, health care providers, Elders and community members (including those who have experienced a death of a family member within the past six to twelve months; individuals with a terminal illness; informal community leaders, youth and key community informants).
 
Cover letters were distributed and consent forms were utilized to obtain consent from both the community and individual participants. The communities received two copies of the Cover letter/Consent Form, one for the Chief to sign and return and the other for the First Nation to keep with contact information. Data collection occurred from July 25, 2005 to September 9, 2005. A total of 190 surveys from the thirteen First Nation communities were completed.
 
In the second stage of data collection, focus groups will be scheduled at the beginning of December 2005. Interview questions in these focus groups will be designed to elicit experiences and values and beliefs of community members regarding palliative care, death and dying and the educational needs of community caregivers. These groups will be held in each community. Participants have been identified through the survey and a general invitation will be posted in each community to include any other community members who are interested in attending. Audio-taping will be utilized to record the interviews and permission to audio tape will be part of the consent.
 
Qualitative and quantitative data form the surveys and focus groups will be analyzed for each community to identify service delivery and educational needs. The analysis will include descriptive statistics on the numerical data obtained from the survey. Interviews will be transcribed from the audio recording and will be analyzed using content analysis. Analytic work will include line-by-line analysis of the transcripts to identify themes. 
 
Phase Two: Dissemination (January and February 2006)  

Phase two will involve conducting an educational workshop in each of the participating communities to present the results of the project and to discuss the recommendations for service and future community caregiver education initiatives. The workshops will be presented by the project team and project advisors.
 
On completion of the project, a summary report will be provided to the Kenora Chiefs Advisory, Ministry of Health and Long-Term Care Northwestern Ontario Regional Office and all participating communities. The report will provide recommendations for service delivery and education in Kenora and Rainy River First Nations communities.
 
Information from this project will be prepared for publication in a professional journal and for presentation at professional conferences, ensuring confidentiality of the participants and participating communities.
 
Funding Body and Amount
 
Funding for this project was provided by the Ontario Ministry of Health and Long-term care, Northwestern Ontario Regional Office. This project will occur over 10 months from May 2005 to February 2006. Total budget for the project is $69, 920. 
 
Recently Extended:
“Palliative Care in First Nations Communities Phase II:  A Participatory Action Research to Provide Community Education and Program Development.” 
Funded by The Kenora Chiefs Advisory Council and the Ontario Ministry of Health and Long-Term Care for $97,869 from April 2006 to March 2007.
 
 
Investigators
 
Project Manager: Mary Lou Kelley

MSW, PhD, Associate Professor, School of Social Work, Lakehead University

Mary Lou Kelley, MSW (University of Toronto), PhD (University of Victoria) is an Associate Professor at Lakehead University, Thunder Bay, ON.  She is Graduate Coordinator for the Collaborative Graduate Program in Gerontology and the Palliative Care Certificate Program, core faculty in the Master of Public Health program, and Research Affiliate with the Centre for Rural and Northern Health Research. She is Director of the Centre for Education and Research on Aging and Health (CERAH) at Lakehead University where her work focuses on promoting interdisciplinary research and education in gerontology and palliative care for health care professionals within rural, remote northwestern Ontario. Mary Lou’s research and publications for the past twenty years have focused on health and social services for the elderly, rural health, long-term care policy and delivery, palliative care and interdisciplinary gerontology education

Project Coordinator: Holly Prince
MSW, School of Social Work, Lakehead University

Holly Prince, MSW (Lakehead University) graduated from the Native Mental Health Worker diploma program at Confederation College in 1998.  She was the recipient of the Board of Governor’s Award for Outstanding Contribution to Student Life and the Ontario Colleges Athletic and Academic Award.   In June 2003, Holly graduated from the Honours Bachelor of Social Work program and received the Dean Braun’s Medal, an award presented to the highest ranking graduating student in the Honours Bachelor of Social Work Program.  Preceding her graduation of the MSW program in May 2005 Holly had also received the Ontario Graduate Scholarship, the Anne B. Cochrane Graduate Award, the Seven Generations Educational Institute Incentive Scholarship; the Jennifer Lynn Webster & Andrew Jussi Wierikko Scholarship; the Hubert Badanai Scholarship; the Joseph Auger Memorial Award of Merit Bursary.