Cultural adaptation of a shared decision making tool with Aboriginal women: a qualitative study

BACKGROUND: 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. METHODS: 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. RESULTS: 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". CONCLUSIONS: 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.