Abstract
Plain English summaryTailoring 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 protocolBackgroundFirst 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.MethodsThis 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.DiscussionFindings 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.
Highlights
First Nations, Inuit and Métis (“FNIM”) populations who are living in Canada have disproportionate and increasing rates of cancer relative to the general population
In phase 1, a peer support Shared decision making (SDM) strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings and, training developed that will i) introduce participant communities to SDM, and ii) train community support workers (CSWs) within these communities
(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 Community support worker (CSW) from each community will be recruited to participate in the study
Summary
The IKT team will be involved in and provide leadership throughout the 2 phases of the study that tailor (phase 1) and field-test (phase 2) a peer support SDM strategy (“SDM strategy”) (Fig. 1). It is anticipated that the Steering committee and IKT team will define success based on criteria that are appropriate to the community and reflect the use of the SDM strategy: for example, do CSWs and community members feel satisfied with the interaction, does it help them to feel informed, do they indicate feeling supported, do they think it will help to foster better participation in making health decisions with their healthcare providers. Pre- and post-interaction surveys (for acceptability of SDM strategy) and post interaction semi-structured interviews (usefulness, relevance of SDM strategy) of CSW and community member experiences will be recorded and evaluated using thematic analysis to identify content (for evidence of strategy concepts) and process (for evidence of SDM strategy delivery approach) factors and contextualized using a postcolonial theoretical lens. Information will be collected and organized to describe stakeholder perspectives on needs, supports and barriers for the determinants of SDM strategy implementation
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