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

Jull et al. BMC Medical Informatics and Decision Making (2015) 15:1 DOI 10.1186/s12911-015-0129-7 RESEARCH ARTICLE Open Access Cultural adaptation of a shared decision making tool with Aboriginal women: a qualitative study Janet Jull1*, Audrey Giles2, Minwaashin Lodge, The Aboriginal Women’s Support Centre, Yvonne Boyer3 and Dawn Stacey4 Abstract 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. Keywords: Equity, Aboriginal, Indigenous, Women, Shared decision making, Cultural adaptation, Usability testing, Health literacy Background Delivery of care from within traditional Western healthcare models often undermines Aboriginal peoples’ health and well-being as these care models reflect values, the use of knowledge systems, and care practices that may not align with those of Aboriginal people [1,2]. * Correspondence: 1 Bruyère Research Institute & University of Ottawa, 85 Primrose Avenue, Room 312, University of Ottawa, Ontario K1R 7G5, Canada Full list of author information is available at the end of the article Western-trained health care providers typically lack understandings of diverse Aboriginal cultures [1,3], which has had a negative impact on the health of Aboriginal women [4] and affected their participation in health care settings [5]. Aboriginal women have a right to safe and effective care practices, including participation with health care providers in making meaningful decisions about their health. Shared decision making (SDM) is a process of collaboration between health care providers and clients, © 2015 Jull et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Jull et al. BMC Medical Informatics and Decision Making (2015) 15:1 developed within Western-informed health care settings [6]. SDM has been found to increase the client’s level of satisfaction with care decisions by better meeting client’s information needs and incorporation of client’s values into health care decisions [7,8]. In summary, SDM is central to patient-centred care [9]. Evidence derived from studies conducted with Aboriginal people about SDM in health care settings is limited [10]. Our previous study indicated that Aboriginal women view SDM as including relational features and which are identified as core competencies for SDM [11] although these views are not yet evident in mainstream models of SDM or in SDM tools and approaches [12]. SDM is facilitated by patient decision aids and decision coaching to support decision making that is shared between health care provider(s) and client [13]. Patient decision aids can facilitate the sharing of information and can contribute to helping the client make preference sensitive decisions by informing the client of the benefits and harms of care options [14]. Patient decision aids are booklets, videos, or online tools that complement practitioner counseling; they have been found to increase people’s involvement in making more informed and value-based care decisions. Although there are over 300 publicly available decision aids, there is much overlap on topics and there remain many decisions for which patient decision aids have not yet been developed. In addition, none of these decision aids have been deemed culturally appropriate or defined as adequate for all Aboriginal populations. Decision coaching supports SDM and coaches are trained to be non-directive, to provide evidence, and to support people rather than offer advice, so that people make choices consistent with their own values and beliefs [15,16]. In addition, decision coaching tailors decision support to be relevant to each situation and is aimed at building decision making skills so that people can apply these skills in other situations. Used alone, decision coaching has been found to improve knowledge for clients and, when combined with a patient decision aid, to increase knowledge and participation in care [16]. Participation in health care requires health literacy skills, which are described as the ability to access and use care, the ability to understand and use information for health and well-being, and the capacity to use information effectively. High levels of health literacy result in empowerment and the capacity to make decisions that support favourable health outcomes for the individual participating in health care systems [17]. Hea (...truncated)