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Trust and world view in shared decision making with indigenous patients: A realist synthesis.

ABSTRACT: INTRODUCTION:How shared decision making (SDM) works with indigenous patient values and preferences is not well understood. Colonization has affected indigenous peoples' levels of trust with institutions, and their world view tends to be distinct from that of nonindigenous people. Building on a programme theory for SDM, the present research aims to refine the original programme theory to understand how the mechanisms of trust and world view might work differently for indigenous patients. DESIGN:We used a six-step iterative process for realist synthesis: preliminary programme theory development, search strategy development, selection and appraisal of literature, data extraction, data analysis and synthesis, and formation of a revised programme theory. DATA SOURCES:Searches were through Medline, CINAHL, and the University of Saskatchewan iPortal for grey literature. Medline and CINAHL searches included the University of Alberta Canada-wide indigenous peoples search filters. DATA SYNTHESIS:Following screening 731 references, 90 documents were included for data extraction (53 peer reviewed and 37 grey literature). Documents from countries with similar colonization experiences were included. RESULTS:A total of 518 context-mechanism-outcome (CMO) configurations were identified and synthesized into 21 CMOs for a revised programme theory. Demographics, indigenous world view, system and institutional support, language barriers, and the macro-context of discrimination and historical abuse provided the main contexts for the programme theory. These inspired mechanisms of reciprocal respect, perception of world view acceptance, and culturally appropriate knowledge translation. In turn, these mechanisms influenced the level of trust and anxiety experienced by indigenous patients. Trust and anxiety were both mechanisms and intermediate outcomes and determined the level of engagement in SDM. CONCLUSION:This realist synthesis provides clinicians and policymakers a deeper understanding of the complex configurations that influence indigenous patient engagement in SDM and offers possible avenues for improvement.

SUBMITTER: Groot G

PROVIDER: S-EPMC7154772 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Shared Decision-making (SDM), a medical decision-making model, was popularized in the late 1980s in reaction to then predominate paternalistic decision-making, aiming to better meet the needs of patients. Extensive research has been conducted internationally examining the benefits of SDM implementation; however, existing theory on how SDM works, for whom, in which circumstances, and why is limited. While literature has shown positive patient, health care provider, and system benefits (SDM outputs), further research is required to understand the nuances of this type of decision-making. As such, we set out to address: "In which situations, how, why, and for whom does SDM between patients and health care providers contribute to improved engagement in the Shared Decision-making process?" METHODS:To achieve our study goals we conducted a seven-step realist synthesis process, which included: (1) preliminary program theory development, (2) search strategy development, (3) selection and appraisal of literature in accordance with realist methodology, (4) data extraction, (5) identification of relevant formal theories, (6) data analysis and synthesis, and (7) formation of a revised program theory with the input of stakeholders. This process was done in accordance with RAMESES guidelines and publication standards for a realist synthesis. Expert consultations were also held to ensure consistency within the SDM literature. RESULTS:Through our realist synthesis, we developed a program theory of SDM which includes three contexts (pre-existing relationship, difficulty of decision, and system support), eight mechanism sets (anxiety, trust, perception of other party capacity, perception of time, self-efficacy, world view, perception of capacity to external support, and recognition of decision), and one outcome (engagement in SDM). CONCLUSIONS:As far as the authors of this paper are aware, this paper is the first to begin unpacking how SDM works, for whom, in which circumstances, and why. By examining key mechanism sets and exploring how they facilitate or inhibit SDM, we have produced a program theory that may assist health care professionals, policy makers, and patients. While further research is suggested to further unpack the concepts identified within this paper, this provides an initial understanding into the theory behind SDM. REGISTRATION:PROSPERO: CRD42017062609.

Project description:BackgroundHealth care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.

Project description:Background. Accurate diagnosis of patients' preferences is central to shared decision making. Missing from clinical practice is an approach that links pretreatment preferences and patient-reported outcomes. Objective. We propose a Bayesian collaborative filtering (CF) algorithm that combines pretreatment preferences and patient-reported outcomes to provide treatment recommendations. Design. We present the methodological details of a Bayesian CF algorithm designed to accomplish 3 tasks: 1) eliciting patient preferences using conjoint analysis surveys, 2) clustering patients into preference phenotypes, and 3) making treatment recommendations based on the posttreatment satisfaction of like-minded patients. We conduct a series of simulation studies to test the algorithm and to compare it to a 2-stage approach. Results. The Bayesian CF algorithm and 2-stage approaches performed similarly when there was extensive overlap between preference phenotypes. When the treatment was moderately associated with satisfaction, both methods made accurate recommendations. The kappa estimates measuring agreement between the true and predicted recommendations were 0.70 (95% confidence interval = 0.052-0.88) and 0.73 (0.56-0.90) under the Bayesian CF and 2-stage approaches, respectively. The 2-stage approach failed to converge in settings in which clusters were well separated, whereas the Bayesian CF algorithm produced acceptable results, with kappas of 0.73 (0.56-0.90) and 0.83 (0.69-0.97) for scenarios with moderate and large treatment effects, respectively. Limitations. Our approach assumes that the patient population is composed of distinct preference phenotypes, there is association between treatment and outcomes, and treatment effects vary across phenotypes. Findings are also limited to simulated data. Conclusion. The Bayesian CF algorithm is feasible, provides accurate cluster treatment recommendations, and outperforms 2-stage estimation when clusters are well separated. As such, the approach serves as a roadmap for incorporating predictive analytics into shared decision making.

Project description:BACKGROUND:Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. METHOD:A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively. RESULTS:The participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p?=?0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p?=?0.006) but no significant difference on the readiness score (87% versus 84%; p?=?0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p?=?0.935). Interview data informed the interpretation of these results. CONCLUSIONS:Although there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results. TRIAL REGISTRATION:The full trial protocol is available at ClinicalTrials. Gov ( NCT03868800 ). The study has been registered retrospectively.

Project description:Objective: The objective was to develop a decision aid (DA) to facilitate shared decision making (SDM) around whether to obtain computed tomography (CT) imaging in patients presenting to the emergency department (ED) with suspected uncomplicated ureterolithiasis.Methods: We used evidence-based DA development methods, including qualitative methods and iterative stakeholder engagement, to develop and refine a DA. Guided by the Ottawa Decision Support Framework, International Patient Decision Aid Standards (IPDAS), and a steering committee made up of stakeholders, we conducted interviews and focus groups with a purposive sample of patients, community members, emergency clinicians, and other stakeholders. We used an iterative process to code the transcripts and identify themes. We beta-tested the DA with patient-clinician dyads facing the decision in real time.Results: From August 2018 to August 2019, we engaged 102 participants in the design and iterative refinement of a DA focused on diagnostic options for patients with suspected ureterolithiasis. Forty-six were ED patients, community members, or patients with ureterolithiasis, and the remaining were emergency clinicians (doctors, residents, advanced practitioners), researchers, urologists, nurses, or other physicians. Patients and clinicians identified several key decisional needs including an understanding of accuracy, uncertainty, radiation exposure/cancer risk, and clear return precautions. Patients and community members identified facilitators to SDM, such as a checklist of signs and symptoms. Many stakeholders, including both patients and ED clinicians, expressed a strong pro-CT bias. A six-page DA was developed, iteratively refined, and beta-tested.Conclusions: Using stakeholder engagement and qualitative inquiry, we developed an evidence-based DA to facilitate SDM around the question of CT scan utilization in patients with suspected uncomplicated ureterolithiasis. Future research will test the efficacy of the DA in facilitating SDM.

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Trust and world view in shared decision making with indigenous patients: A realist synthesis.

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