ORCID Profile
0000-0003-3561-8276
Current Organisations
University of Minnesota
,
University of Minnesota System
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Publisher: SAGE Publications
Date: 2007
Abstract: In 1999 we began research, funded by the ‘Thomas Pocklington Trust’, to explore the opinions of visually impaired people on visual impairment research. We found people wanted greater inclusion of visually impaired people in such research and participatory, empowering and emancipatory research was a priority for them. We also found, through reviewing the academic literature, that there was a dearth of such work in the field. In this article we revisit the topic to review research that has or has not been conducted since our first study to see if there has been a change in the use of emancipatory methods in the field. We have contextualized our review in a discussion on the field of disability studies and the international social policy context of disability issues. We found a growth of interest and activity in participatory, emancipatory and empowering research in the field of disability research more generally. There was also some indication that the social model of disability has had an impact on national and international social policy. However, our review found that there continues to be a dearth of emancipatory research in relation to visual impairment. The one study we did locate highlighted how participatory methods are not, in our view, necessarily consistent with the epistemological underpinnings of emancipatory methods. We believe the call from within disability studies for the greater use of emancipatory research methods has not been sufficiently realized in the field of visual impairment and more needs to be done to ground politically informed epistemological understandings in visual impairment research if more progress is to be made.
Publisher: BMJ
Date: 11-2017
DOI: 10.1136/BMJOPEN-2017-016400
Abstract: Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated h er effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers). This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs appraise quality using the Mixed Methods Appraisal Tool conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs and integrate these results with those of a parallel PCCNs’ qualitative decisional need assessment (semistructured interviews and focus group with stakeholders). This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs’ decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network. CRD42015020558.
Publisher: Springer Science and Business Media LLC
Date: 09-11-2022
DOI: 10.1186/S12875-022-01879-5
Abstract: In primary care, patients increasingly face difficult decisions related to complex care needs (multimorbidity, polypharmacy, mental health issues, social vulnerability and structural barriers). There is a need for a pragmatic conceptual model to understand decisional needs among patients with complex care needs and outcomes related to decision. We aimed to identify types of decisional needs among patients with complex care needs, and decision-making configurations of conditions associated with decision outcomes. We conducted a systematic mixed studies review. Two specialized librarians searched five bibliographic databases (Medline, Embase, PsycINFO, CINAHL and SSCI). The search strategy was conducted from inception to December 2017. A team of twenty crowd-reviewers selected empirical studies on: (1) patients with complex care needs (2) decisional needs (3) primary care. Two reviewers appraised the quality of included studies using the Mixed Methods Appraisal Tool. We conducted a 2-phase case-based qualitative synthesis framed by the Ottawa Decision Support Framework and Gregor’s explicative-predictive theory type. A decisional need case involved: (a) a decision (what), (b) concerning a patient with complex care needs with bio-psycho-social characteristics (who), (c) made independently or in partnership (how), (d) in a specific place and time (where/when), (e) with communication and coordination barriers or facilitators (why), and that (f) influenced actions taken, health or well-being, or decision quality (outcomes). We included 47 studies. Data sufficiency qualitative criterion was reached. We identified 69 cases (2997 participants across 13 countries) grouped into five types of decisional needs: ‘prioritization’ ( n = 26), ‘use of services’ ( n = 22), ‘prescription’ ( n = 12), ‘behavior change’ ( n = 4) and ‘institutionalization’ ( n = 5). Many decisions were made between clinical encounters in situations of social vulnerability. Patterns of conditions associated with decision outcomes revealed four decision-making configurations: ‘well-managed’ ( n = 13), ‘asymmetric encounters’ ( n = 21), ‘self-management by default’ ( n = 8), and ‘chaotic’ ( n = 27). Shared decision-making was associated with positive outcomes. Negative outcomes were associated with independent decision-making. Our results could extend decision-making models in primary care settings and inform subsequent user-centered design of decision support tools for heterogenous patients with complex care needs.
No related grants have been discovered for Rebekah Pratt.