Shared decision making (SDM) may narrow health equity gaps experienced by Aboriginal women. SDM tools such as patient decision aids can facilitate SDM between the client and health care providers; SDM tools for use in Western health care settings have not yet been developed for and with Aboriginal populations. This study describes the adaptation and usability testing of a SDM tool, the Ottawa Personal Decision Guide (OPDG), to support decision making by Aboriginal women.
An interpretive descriptive qualitative study was structured by the Ottawa Decision Support Framework and used a postcolonial theoretical lens. An advisory group was established with representation from the Aboriginal community and used a mutually agreed-upon ethical framework. Eligible participants were Aboriginal women at Minwaashin Lodge. First, the OPDG was discussed in focus groups using a semi-structured interview guide. Then, individual usability interviews were conducted using a semi-structured interview guide with decision coaching. Iterative adaptations to the OPDG were made during focus groups and usability interviews until saturation was reached. Transcripts were coded using thematic analysis and themes confirmed in collaboration with an advisory group.
Aboriginal women 20 to 60 years of age and self-identifying as First Nations, Métis, or Inuit participated in two focus groups (n = 13) or usability interviews (n = 6). Seven themes were developed that either reflected or affirmed OPDG adaptions: 1) "This paper makes it hard for me to show that I am capable of making decisions"; 2) "I am responsible for my decisions"; 3) "My past and current experiences affect the way I make decisions"; 4) "People need to talk with people"; 5) "I need to fully participate in making my decisions"; 6) "I need to explore my decision in a meaningful way"; 7) "I need respect for my traditional learning and communication style".
Adaptations resulted in a culturally adapted version of the OPDG that better met the needs of Aboriginal women participants and was more accessible with respect to health literacy assumptions. Decision coaching was identified as required to enhance engagement in the decision making process and using the adapted OPDG as a talking guide.
School of Rehabilitation Therapy, Faculty of Health Sciences, 31 George Street, Louise D. Acton Building, Queen's University, Kingston, Ontario, Canada. janet.jull@queensu.ca.
Inuit experience the highest cancer mortality rates from lung cancer in the world with increasing rates of other cancers in addition to other significant health burdens. Inuit who live in remote areas must often travel thousands of kilometers to large urban centres in southern Canada and negotiate complex and sometimes unwelcoming health care systems. There is an urgent need to improve Inuit access to and use of health care. Our study objective was to understand the experiences of Inuit in Canada who travel from a remote to an urban setting for cancer care, and the impacts on their opportunities to participate in decisions during their journey to receive cancer care.
We are an interdisciplinary team of Steering Committee and researcher partners ("the team") from Inuit-led and/or -specific organizations that span Nunavut and the Ontario cancer health systems. Guided by Inuit societal values, we used an integrated knowledge translation (KT) approach with qualitative methods. We conducted semi-structured interviews with Inuit participants and used process mapping and thematic analysis.
We mapped the journey to receive cancer care and related the findings of client (n?=?8) and medical escort (n?=?6) ("participant") interviews in four themes: 1) It is hard to take part in decisions about getting health care; 2) No one explains the decisions you will need to make; 3) There is a duty to make decisions that support family and community; 4) The lack of knowledge impacts opportunities to engage in decision making. Participants described themselves as directed, with little or no support, and seeking opportunities to collaborate with others on the journey to receive cancer care.
We describe the journey to receive cancer care as a "decision chain" which can be described as a series of events that lead to receiving cancer care. We identify points in the decision chain that could better prepare Inuit to participate in decisions related to their cancer care. We propose that there are opportunities to build further health care system capacity to support Inuit and enable their participation in decisions related to their cancer care while upholding and incorporating Inuit knowledge.
Little is known about shared decision-making (SDM) with Métis, First Nations and Inuit women ("Aboriginal women"). SDM is a collaborative process that engages health care professional(s) and the client in making health decisions and is fundamental for informed consent and patient-centred care. The objective of this study is to explore Aboriginal women's health and social decision-making needs and to engage Aboriginal women in culturally adapting an SDM approach.
Using participatory research principles and guided by a postcolonial theoretical lens, the proposed mixed methods research will involve three phases. Phase I is an international systematic review of the effectiveness of interventions for Aboriginal peoples' health decision-making. Developed following dialogue with key stakeholders, proposed methods are guided by the Cochrane handbook and include a comprehensive search, screening by two independent researchers, and synthesis of findings. Phases II and III will be conducted in collaboration with Minwaashin Lodge and engage an urban Aboriginal community of women in an interpretive descriptive qualitative study. In Phase II, 10 to 13 Aboriginal women will be interviewed to explore their health/social decision-making experiences. The interview guide is based on the Ottawa Decision Support Framework and previous decisional needs assessments, and as appropriate may be adapted to findings from the systematic review. Digitally-recorded interviews will be transcribed verbatim and analyzed inductively to identify participant decision-making approaches and needs when making health/social decisions. In Phase III, there will be cultural adaptation of an SDM facilitation tool, the Ottawa Personal Decision Guide, by two focus groups consisting of five to seven Aboriginal women. The culturally adapted guide will undergo usability testing through individual interviews with five to six women who are about to make a health/social decision. Focus groups and individual interviews will be digitally-recorded, transcribed verbatim, and analyzed inductively to identify the adaptation required and usability of the adapted decision guide.
Findings from this research will produce a culturally sensitive intervention to facilitate SDM within a population of urban Aboriginal women, which can subsequently be evaluated to determine impacts on narrowing health/social decision-making inequities.
Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol.
Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare. Peer support with SDM further improves these benefits. The purpose of this study is to tailor and test a peer support SDM strategy with community support workers to increase FNIM people's participation in their cancer care.This project has two phases that will be designed and conducted with a Steering Committee that includes members of the FNIM and cancer care communities. First, a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings, and training in the SDM strategy developed for community support workers. Three communities will be supported for participation in the study and community support workers who are peers from each community will be trained to use the SDM strategy.Next, each community support worker will work with a community member who has a diagnosis of cancer or who has supported a family member with cancer. Each community support worker and community member pair will use the SDM strategy. The participation and experience of the community support worker and community member will be evaluated.The research will be used to develop strategies to support people who are making decisions about their health.
Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol Background First Nations, Inuit and Métis ("FNIM") people face increased cancer risks in relation to general populations and experience barriers to health service use. Shared decision making (SDM) has been found to improve peoples' participation and outcomes in healthcare and peer support with SDM further improves these benefits. The purpose of this study is to tailor and then field test, by and with FNIM communities, a peer support SDM strategy for use in cancer care. Methods This project has 2 theory-driven phases and 5 stages (a-e). A core research team that includes members of the Aboriginal Cancer Control Unit of Cancer Care Ontario communities and academic researchers, will work with a Steering Committee. In phase 1, (stage a) a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings and (stage b), training developed that will i) introduce participant communities to SDM, and ii) train community support workers (CSWs) within these communities. Next (stage c), three communities will be approached for voluntary participation in the study. These communities will be introduced to SDM in community meetings, and if in agreement then CSWs from each community will be recruited to participate in the study. One volunteer CSW from each community will be trained to use the peer support SDM strategy to enable phase 2 (field test of the peer support SDM strategy).During phase 2 (stage d), each CSW will be matched to a volunteer community member who has had a diagnosis of cancer or has supported a family member with cancer and is familiar with Ontario cancer systems. Each CSW-community member pair (3 to 4 pairs/community) will use the tailored peer support SDM strategy; their interaction will be audio-recorded and their participation and experience evaluated (total of 9 to 12 interviews). As well (stage e), data will be collected on health systems' factors related to the use of the peer support SDM strategy. Discussion Findings will develop peer support SDM strategies to enhance participation of FNIM people in cancer care decisions, advance knowledge translation science, and support a proposal to conduct a multi-site implementation trial.
Notes
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