31 research outputs found

    Non-disclosure of chronic kidney disease in primary care and the limits of instrumental rationality in chronic illness self-management

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    Early detection of long term conditions is predicated on assumptions that lifestyle changes and medications can be used to reduce or manage the risk of condition progression. However, ambiguity remains about the nature and place of diagnostic disclosure to people in newly recognised or asymptomatic ‘pre’ conditions such as early stage chronic kidney disease (CKD). The disclosure of a diagnosis is relevant to instigating strategies which rely on actively engaging patients as self-managers of their own care. Whilst primary care routinely records a diagnosis of early stage CKD, little is known about how patients learn about the fact that they have CKD or how they respond to this. This study aimed to explore patients' experiences of disclosure of CKD in primary care settings. A nested qualitative study of participants recruited to a trial of an intervention for CKD patients in Greater Manchester, UK was undertaken. A purposive sample of 26 patients, with a mean age of 72 years (range 59e89, median 71), were interviewed during 2012. Interview transcripts were analysed using constant comparative techniques. Narrative accounts reflected limited or partial disclosure of CKD; often cast in vague terms as “nothing to worry about”. How patients described themselves in terms of participation and their tendencies towards ‘active’ or ‘passive’ involvement in consultations emerged as important components of narratives around disclosure. The findings illuminate the ways in which diagnosis is oriented in a context where it is possible to meet the requirements for remuneration under a pay for performance system of primary care, whilst apparently not disclosing a label or a diagnosis to patients. This challenges the presumptions inherent in wider health policy objectives that are increasingly built on the notion of responsible patients and the ethos of the active support of self-management for pre-conditions

    Core competencies in the science and practice of knowledge translation: description of a Canadian strategic training initiative

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    <p>Abstract</p> <p>Background</p> <p>Globally, healthcare systems are attempting to optimize quality of care. This challenge has resulted in the development of implementation science or knowledge translation (KT) and the resulting need to build capacity in both the science and practice of KT.</p> <p>Findings</p> <p>We are attempting to meet these challenges through the creation of a national training initiative in KT. We have identified core competencies in this field and have developed a series of educational courses and materials for three training streams. We report the outline for this approach and the progress to date.</p> <p>Conclusions</p> <p>We have prepared a strategy to develop, implement, and evaluate a national training initiative to build capacity in the science and practice of KT. Ultimately through this initiative, we hope to meet the capacity demand for KT researchers and practitioners in Canada that will lead to improved care and a strengthened healthcare system.</p

    A conceptual framework for interprofessional shared decision making in home care: Protocol for a feasibility study

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    <p>Abstract</p> <p>Background</p> <p>Shared decision making (SDM) is fundamental to informed consent and client-centered care. So far, SDM frameworks have been limited to the client-physician dyad, even though care is increasingly delivered by interprofessional (IP) teams. IP collaboration is especially essential in home care, one of health care's most rapidly growing areas. This study will assess whether it is possible to practice SDM in IP home care.</p> <p>Methods/Design</p> <p>We will use a qualitative case study and a quantitative survey to capture the macro, meso and micro levels of stakeholders in home care. The case study will follow the knowledge-to-action process framework to evaluate the work of an IP home care team at a Quebec City health center. Sources of data will include one-on-one interviews with patients, family caregivers or surrogates and significant others, and administrators; a focus group of home care health professionals; organizational documents; and government policies and standards. The interview guide for the interviews and the focus group will explore current practices and clinical problems addressed in home care; factors that could influence the implementation of the proposed IP approach to SDM; the face and content validity of the approach; and interventions to facilitate the implementation and evaluation of the approach. The survey will ask 300 health professionals working in home care at the health center to complete a questionnaire based on the Theory of Planned Behaviour that measures their intentions to engage in an IP approach to SDM. We will use our analysis of the individual interviews, the focus group and the survey to elaborate a toolkit for implementing an IP approach to SDM in home care. Finally, we will conduct a pilot study in Alberta to assess the transferability of our findings.</p> <p>Discussion</p> <p>We believe that developing tools to implement IP SDM in home care is essential to strengthening Canada's healthcare system and furthering patient-centered care. This study will contribute to the evaluation of IP SDM delivery models in home care. It will also generate practical, policy-oriented knowledge regarding the barriers and facilitators likely to influence the practice of IP SDM in home care.</p

    How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol

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    Background Clinical practice guidelines are largely conceived as tools that will inform health professionals' decisions rather than foster patient involvement in decision making. The time now seems right to adapt clinical practice guidelines in such a way that both the professional's perspective as care provider and the patients' preferences and characteristics are being weighed equally in the decision-making process. We hypothesise that clinical practice guidelines can be adapted to facilitate the integration of individual patients' preferences in clinical decision making. This research protocol asks two questions: How should clinical practice guidelines be adapted to elicit patient preferences and to support shared decision making? What type of clinical decisions are perceived as most requiring consideration of individual patients' preferences rather than promoting a single best choice? Methods Stakeholders' opinions and ideas will be explored through an 18-month qualitative study. Data will be collected from in-depth individual interviews. A purposive sample of 20 to 25 key-informants will be selected among three groups of stakeholders: health professionals using guidelines (e.g., physicians, nurses); experts at the macro- and meso-level, including guideline and decision aids developers, policy makers, and researchers; and patient representatives. Ideas and recommendations expressed by stakeholders will be prioritized by nominal group technique in expert meetings. Discussion One-for-all guidelines do not account for differences in patients' characteristics and for their preferences for medical interventions and health outcomes, suggesting a need for flexible guidelines that facilitate patient involvement in clinical decision making. The question is how this can be achieved. This study is not about patient participation in guideline development, a closely related and important issue that does not however substitute for, or guarantee individual patient involvement in clinical decisions. The study results will provide the needed background for recommendations about potential effective and feasible strategies to ensure greater responsiveness of clinical practice guidelines to individual patient's preferences in clinical decision-making

    This chapter is adapted from a forthcoming article in the Journal of Social Issues, “Internet

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    In an earlier publication, we reported small but reliable negative effects of using the Internet on measures of social involvement and psychological well-being among new Internet users in a sample of Pittsburgh families in 1995-1996. We called the effects a “paradox ” because participants in the sample used the Internet heavily for communication, which typically has positive effects on well being. Since that first study, the Internet changed markedly, giving people much greater choice of contacts, activities, and information. In a 3-year follow-up of the original sample, we find that negative effects are no longer evident. We also report a longitudinal study in 1998-1999 of new computer and television purchasers. This new sample used the Internet for communication and for information, and generally experienced overall positive effects of using the Internet on communication with friends and family, community involvement, and psychological well-being. Using the Internet generally predicted better outcomes for extraverts and those with more social support but worse outcomes for introverts and those with less support. Our studies suggest that many people, especially those with good social resources, have integrated the Internet into their ordinary lives to their advantage

    Internet Paradox Revisited

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    Kraut et al. (1998) reported negative effects of using the Internet on social involvement and psychological well-being among new Internet users in 1995-1996. We called the effects a “paradox” because participants used the Internet heavily for communication, which generally has positive effects. A 3-year follow-up of 208 of these respondents found that negative effects dissipated. We also report findings from a longitudinal survey in 1998-99 of 406 new computer and television purchasers. This sample generally experienced positive effects of using the Internet on communication, social involvement, and well-being. However, consistent with a “rich get richer” model, using the Internet predicted better outcomes for extraverts and those with more social support but worse outcomes for introverts and those with less support.</p
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