Research

This page is a showcase of recent research projects and publications.

Title: Project 10 System Navigation Tool

Researchers: Duggleby, W.(PI) ( University of Saskatchewan)
Co-Investigators: Leipert, B. ( University of Western Ontario) Taniguchi, A. (Hamilton Hospice Palliative Care Network), Marshall, D. ( Hamilton Hospice Palliative Care Network) Willison, K. (McMaster University) Justice, C. (St. Josephs Health Services Research Network, Hamilton) Goodridge, D. (University of Saskatchewan) and Wilson, D. (University of Alberta)

Abstract: This study is one of 10 projects of a multidisciplinary pan-Canadian research team co-lead by Dr. Allison Williams (McMaster) and Dr. Donna Wilson (Alberta) designed to improve Palliative and End of Life care for rural terminally-ill/dying persons and their families (including caregivers). Project 10 is lead by Dr. Wendy Duggleby. The overall purpose of Project #10 is to develop and pilot test a System Navigation Tool (SNT) suitable for older terminally-ill patients and their families in rural communities that facilitates timely access and seamless transitions. This three-year study includes 3 phases: 1) qualitative study exploring transitions experienced by older rural palliative patients and their families from the perspective of bereaved family members and health care providers as also identified by palliative care providers and bereaved (post death) family members, 2) development of a system navigation tool for rural older palliative patients and their families based on the qualitative findings and 3) pilot testing of the tool.

The study is being conducted in the PA Parkland, Five Hills and Sunrise Health Region.

CIHR ICE grant HOA-80057 titled ‘Timely Access and Seamless Transitions in Rural Palliative/End-of-Life Care’ was funded through CIHR Institute of Cancer Research and CIHR Institute of Health Services and Policy Research to A. Williams and D. Wilson (Co-PIs), and Co-Investigators: K. Brazil, D. Brooks, N. Chappell, W. Duggleby, R. Fainsainger, L. Fillion, D. Cloutier-Fisher, D. Goodridge, C. Justice, S. Kaasalainen, M.L. Kelley, K. Kovacs-Burns, M. MacLean, D. Marshall, V. Menec, J.L. Richards, C. Ross, A. Taniguichi, R. Thomas, C. Truman, and K. Willison”.

Title: A Pilot Study of the Discourse of Hope of Older Advanced Cancer Patients and their Caregivers at the End of Life.

Researcher(s): Wendy Duggleby, DSN, RN, AOCN (PI) University of Saskatchewan
The study is anticipated to start July, 2006, completed by August, 2007.

Abstract: Hope is very important to people with cancer at the end of life. The purpose of this study is to collect preliminary data and to test study procedures for future research. This research will explore what hope means to older palliative patients with advanced cancer, their family member and the patient’s primary nurse. It will also explore the meaning of hope found in printed media (newspapers). Three groups composed of a palliative cancer patient, their family member and the patient’s primary nurse will be asked to talk about hope. They will also be asked to make suggestions on the study procedures. Newspaper articles dealing with hope and cancer in a 6 month time frame will also be looked at to see what they say about hope. Findings from this research will assist in preparing for a larger study on this topic.

Funding: This study is funded by the University of Saskatchewan President’s SSHRC Research Grant

Title: Completing the Circle: End of Life Care with Aboriginal Families

Researcher(s): Dr. Mary Hampton (PI), Dr. Angelina Baydala, Prof. Carrie Bourassa, Prof. Gerald Saul, Dr. Michael MacLean, Kim McKay-McNabb, Velda Clark, Elder Ken Goodwill, Elder Betty McKenna, Roxanne Boekelder & Deb Wiszniak

Abstract: The goal of our research program is to facilitate delivery of culturally appropriate end of life care for Aboriginal families through community action research that: (1) enhances awareness among non-Aboriginal health care providers of culturally appropriate end of life health care for Aboriginal families; (2) increases awareness among Aboriginal families of existing resources and traditional end of life protocol. The cross-cultural palliative care theoretical framework described in the literature suggests that palliative care principles and practice are influenced by cultural values and must be uniquely adapted if ethnic minorities are to have confidence in the care provided. Aboriginal cultures in Canada are in particular need of attention from end of life health care researchers due to high mortality rates and a fast-growing population. Results of our pilot project suggest the need for development of cross-cultural materials to increase cross-cultural knowledge. With funding from the Canadian Institutes of Health Research, we will: (1) produce a series of three videos documenting traditional Aboriginal end of life knowledge and protocol (children/youth, home care, and specific topics relating to end of life); (2) construct a logic model for developing an Aboriginal unit in the Bereavement Centre of Excellence in Regina; (3) deliver educational and material from this space and evaluate outcome of our action research initiative. Results of this programmatic operating grant will provide action-oriented resources that will bring greater cultural awareness to the delivery of palliative and end of life health care.

Funding: Canadian Institutes of Health Research, Operating Grant 2006-2009.

Title: Developing and Piloting Cross-Cultural Curriculum for Delivery and Utilization of End of Life Health Care Services

Researcher(s): Dr. Mary Hampton (PI), Dr. Angelina Baydala, Prof. Carrie Bourassa, Prof. Gerald Saul, Kim McKay-McNabb, Elder Ken Goodwill, Elder Betty McKenna, Dr. Thomas Hadjistavropoulos, Roxanne Boekelder & Deb Wiszniak.

Abstract: Results of previous research conducted by our team validate findings from other researchers who consistently suggest that services based on palliative care philosophy are underutilized by ethnic minorities due to cultural barriers. The proposed project focuses on one culture in need of these services: Aboriginal cultures in Canada. Using Community Action Research methodology, this pilot project put into action recommendations made in the literature to: (1) inform end of life health care providers of culturally sensitive protocol when dealing with Aboriginal families through videos, lectures and pamphlets; (2) inform the community of end of life care services (increase awareness); and (3) increase Aboriginal families' use of these services. Products generated with this funding include: video, educational lecture material and powerpoint presentation; fact sheets describing appropriate Aboriginal end of life care cultural protocol; and fact sheets describing available palliative care services or Aboriginal families. Research partners are available to deliver and distribute these materials to health care providers and recipients of health care. We have administered a survey to Aboriginal families asking about present awareness and utilization of services will be administered to provide data with which to compare subsequent awarenes and utilization of services to evaluate effectiveness of this pilot project. Results will be published in academic journals to contribute knowledge to the cross-cultural palliative care conceptual theoretical model used in this research.

Funding: Canadian Institutes of Health Research, 2004-2005

Title: Primary Health Care: Mentoring in Saskatchewan, Funded by Saskatchewan Health Research Foundation (SHRF)

Researcher(s): R. Thomas-MacLean (P.I.)

Abstract: The purpose of this research is to seek input from family physician about developing a mentoring program in primary health care. Current physician shortages are predicted to worsen due to a number of factors, including retirement, relocation and issues associated with job satisfaction. Mentoring programs have been successful in addressing some of these issues in other professions, but there are few, if any, mentoring programs in family medicine. Our team will research different types of mentorship programs, as well as trends and possibilities for mentoring. Building upon that scan, we will then conduct small group discussions with junior and senior family physicians to create a Mentorship Model. The same physicians will also provide the research team with feedback on the initial Model. This will ensure the Mentorship Model is grounded in the expertise of those who would implement it. We will then share the Mentorship Model with Departments of Family Medicine across Canada in order to form a national research team which will eventually test the Model. The testing of the Model and the research could have a significant impact on people’s health as physicians who engage in a mentoring program may continue to contribute to primary health beyond retirement and mentoring could assist with physician recruitment and retention. A mentoring program could also make family medicine more attractive to medical students as they select areas of specialization.

Funding: New Investigator Establishment Grant 2006-2008, $78,530

Title: Charting the Course of Arm Morbidity in Breast Cancer: A Prospective, Longitudinal Follow-Up

Researcher(s): R. Thomas-MacLean (P.I.), T. Hack, B. Miedema, A. Towers, W. Kwan, S. Tatemichi, A. Tilley.

Abstract: Breast Cancer treatment can result in arm morbidity which can be extremely disabling. Arm morbidity includes conditions such as postmastectomy pain syndrome and lymphedema, and is often associated with limited range of motion. Recent research indicates that 30-50% of all breast cancer survivors will experiences some form of arm morbidity, but rates of incidence vary and have not been calculated from prospective data. Further, recent research suggests that sentinel node biopsy may not result in decreased arm morbidity.

More importantly, the psychosocial impact of arm morbidity has also been under-researched. As a result, very little is known about its impact on paid and unpaid labour, intimacy, and child care. Little is known about the relationship between arm morbidity and co-morbidities, such as diabetes, cardiovascular disease, and arthritis. While women are often told to avoid certain activities (such as heavy lifting, repetitive exercises), in order to avoid arm problems, there is no rigorous, prospective data to support such actions. The lack of research has left health care professionals and breast cancer survivors ill-equipped to address arm morbidity.

The focus of our interdisciplinary study will be to examine the course of arm morbidity in women with breast cancer, over a period of three years. The research team will chart the overall course of arm morbidity and assess the impact of this condition on the lives of breast cancer survivors, with particular reference to psychosocial factors. The longitudinal nature of the study (four points of quantitative data collection) will enable us to capture clinical dimensions of arm morbidity, including the emergence of symptoms, exacerbations/remissions, and possible risk factors. This in an interdisciplinary study, with team members representing oncology, family medicine, psychology, physiotherapy and sociology. Comparisons will be made among the medical, psychological and social data gathered from patients. This multi-centred study (British Columbia, Manitoba, Quebec, New Brunswick), will also provide researchers with an opportunity to assess the effect of regional disparities, with respect to diagnosis and access to treatment. Each site will include a minimum of two collaborators, with clinical/ research experience in the area of arm morbidity.

We will utilize a mixed methods (quantitative and qualitative) approach to data collection and analysis. One thousand women with breast cancer (Stage I, II, III) will be enrolled in the study as they near completion of adjuvant treatment. Arm function will be assessed at the time of enrollment and annually thereafter. Every six months, participants will be asked to complete four short questionnaires designed to assess physical symptoms, possible triggers, the psychosocial impact of arm morbidity, and access to treatment. In addition, 40 participants will be invited to participate in semi-structure interviews, which will provide additional, in-depth data regarding the social impact of arm morbidity.

Funding: Canadian Institutes of Health Research CIHR- Operating Grant Sept. 2004- June 2007, $438,336 and CIHR - New Investigator Award- Regional Partnership Program Jan. 2006- Jan. 2010, $275,000

Title: Visualizing Breast Cancer: Exploring Aboriginal Women’s Experiences

Researcher(s): Poudrier (Co-P.I.), R. Thomas-MacLean (Co-P.I.)

Abstract:
Background: There is a paucity of sociological research surrounding breast cancer survivorship, and little attention paid to ethnicity and its intersection with quality of life after breast cancer, despite assertions that ethnicity could have a significant impact on survivorship, particularly with regard to psychosocial well-being.

Objective: To explore issues associated with breast cancer survivorship, according to the perspectives of Aboriginal women in Saskatchewan, Canada.

Methodology: This study employs qualitative approaches to data collection and analysis. Qualitative research facilitates the study of complex topics, such as breast cancer survivorship, that may not be adequately captured by other research methods. Utilization of a new qualitative research method (Photovoice) in connection with more established methods of qualitative data gathering (i.e., interviews and a focus group discussion) will be employed to document the impact of breast cancer on Aboriginal women.

Funding: Canadian Breast Cancer Research Alliance- Development and Exploratory Grants May 2005- May 2007, $43,471

Publications:

Baydala, A., Hampton, M., Kinunwa, L., Kinunwa, G., Kinunwa, L. Sr. (2006). Death, dying, grieving, and end of life care: Understanding personal meanings of aboriginal friends. The Humanistic Psychologist, 34(2), 159-176.

In health care settings, personal meanings of death, dying, grieving, and care at end of life tend to be eclipsed by technical and rational biomedical frameworks of understanding. We propose that by narrating personal meanings, multivocal significance can be restored within worlds of care. In this article, we illustrate a relationship-based approach to the construction of meaning. We convey messages of personal meaning as they emerge in the relationship of the researchers with traditionally minded Aboriginal friends asked to consider personal meanings of death, dying, grief, and end-of-life care. Recognizing that there are many different Aboriginal traditions unique to different Aboriginal peoples, the messages conveyed here are grounded in a unique personal perspective that is part of an infinite circle of cultural relations.
Baydala, A., Placsko, C., Hampton, M., Bourassa, C., McKay-McNabb, K. (2006). A narrative of research with, by, and for aboriginal peoples. Pimatisiwin, 4(1), 47-65.

Research for this paper was supported by the Canadian Institutes of Health Research (CIHR #200309PEP), Saskatchewan Health Research Foundation (SHRF), and the Indigenous Peoples Health Research Centre (IPHRC). Special thanks to Elder Ken Goodwill for his guidance, leadership, and wisdom.

In an effort to contribute to the currently developing understanding of ethical protocol for Aboriginal research, this paper offers a reflection on how the First Nations principles of ownership, control, access, and possession (OCAP) are understood and enacted by one research team committed to community-based research and participatory action with Aboriginal peoples in southern Saskatchewan. This account focuses, not on the methodology, but on the interpersonal process of community-based action research designed to increase health care providers’ awareness of the end-of-life health care needs of Aboriginal individuals and their families. It is our intention to bridge local and traditional knowledges, promoting respectful research with, by, and for Aboriginal peoples. To this end, we offer this narration of the personal meanings of our research process.