RESUMEN
Computable biomedical knowledge (CBK) is: "the result of an analytic and/or deliberative process about human health, or affecting human health, that is explicit, and therefore can be represented and reasned upon using logic, formal standards, and mathematical approaches." Representing biomedical knowledge in a machine-interpretable, computable form increases its ability to be discovered, accessed, understood, and deployed. Computable knowledge artifacts can greatly advance the potential for implementation, reproducibility, or extension of the knowledge by users, who may include practitioners, researchers, and learners. Enriching computable knowledge artifacts may help facilitate reuse and translation into practice. Following the examples of 10 Simple Rules papers for scientific code, software, and applications, we present 10 Simple Rules intended to make shared computable knowledge artifacts more useful and reusable. These rules are mainly for researchers and their teams who have decided that sharing their computable knowledge is important, who wish to go beyond simply describing results, algorithms, or models via traditional publication pathways, and who want to both make their research findings more accessible, and to help others use their computable knowledge. These rules are roughly organized into 3 categories: planning, engineering, and documentation. Finally, while many of the following examples are of computable knowledge in biomedical domains, these rules are generalizable to computable knowledge in any research domain.
Asunto(s)
Biología Computacional , Humanos , Programas Informáticos , Difusión de la Información/métodos , Algoritmos , ConocimientoRESUMEN
Little is known about the experience of family caregivers when their care partner dies and their dyadic relationship comes to an end. This study qualitatively examined and characterized the loss of the dyadic experience for the caregiver after the death of their care partner. Data was accrued as part of a randomized clinical trial in 29 older hospice caregivers. Iterative thematic analysis focused on dyadic processes before, during and post death. Using two relational parameters from Relational Turbulence Theory resulted in a preliminary characterization of a new concept-dyadic dissolution as a cognitive and affective process whereby a remaining member of a dyad experiences relational uncertainty and partner interference while adapting (or not) to the death of their care partner. Findings suggest that asking several open-ended questions about the dyadic relationship will enable assessment for any continuing impact of relational uncertainty and partner interference on bereaved caregivers.
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Cuidadores , Cuidados Paliativos al Final de la Vida , Cuidadores/psicología , Humanos , Cuidados PaliativosRESUMEN
OBJECTIVE: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population. METHODS: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up. RESULTS: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback. CONCLUSION: These results are encouraging in assessing this population's willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.
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Planificación Anticipada de Atención , Cuidado Terminal , Estudios de Factibilidad , Humanos , Proyectos Piloto , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND AND OBJECTIVES: Complicated grief (CG) is severe, prolonged (>12 months) grieving. Complicated grief disproportionately affects older adults and is associated with negative physical/psychological effects. Although treatment options exist, those which do are time-intensive. We report on a randomized clinical trial (RCT) which examined whether accelerated resolution therapy (ART), a novel mind-body therapy, is effective in treating CG, post-traumatic stress disorder (PTSD), and depression among hospice informal caregivers. RESEARCH DESIGN AND METHODS: Prospective 2 group, wait-listed RCT. All participants were scheduled to receive 4 ART sessions. INCLUSION: ≥60 years, inventory of CG >25, and PTSD checklist for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition >33 or Psychiatric Diagnostic Screen Questionnaire PTSD subscale >5. EXCLUSION: Major psychiatric disorder, other current psychotherapy treatment. Depression was measured by the Center for Epidemiologic Studies Depression. RESULTS: Mean (standard deviation [SD]) age of 54 participants was 68.7 (7.2) years, 85% female, and 93% white. Participants assigned to ART reported significantly greater mean (SD) CG reduction (-22.8 [10.3]) versus Wait-list participants (-4.3 [6.0]). Within-participant effect sizes (ESs) for change from baseline to 8-week post-treatment were CG (ES = 1.96 (95% confidence interval [CI]: 1.45-2.47; P < .0001), PTSD (ES = 2.40 [95% CI: 1.79-3.00]; P < .0001), depression (ES = 1.63 [95% CI: 1.18-2.08; P < .0001). Treatment effects did not substantially differ by baseline symptom levels. DISCUSSION AND IMPLICATIONS: Results suggests that ART presents an effective and less time-intensive intervention for CG in older adults. However, it should undergo further effectiveness testing in a larger, more diverse clinical trial with a focus on determining physiological or behavioral mechanisms of action.
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Pesar , Trastornos por Estrés Postraumático , Anciano , Cuidadores , Femenino , Humanos , Masculino , Psicoterapia , Trastornos por Estrés Postraumático/terapia , Encuestas y CuestionariosRESUMEN
This study explored the perceived goals, barriers, and strategies that characterize family interactions about advance care planning (ACP), which is instrumental in guiding end-of-life care. Discussions within the family context can significantly improve end-of-life decision making but are complicated, partly because participants are attempting to achieve multiple, and often competing, goals. Participants (n = 75) responded to a hypothetical scenario about a conversation with a parent about ACP by completing an anonymous online survey. Respondents described their conversational goals, anticipated barriers, and strategies they thought would be helpful. Thematic data analysis identified four dilemmas participants faced while attempting to achieve multiple, conflicting goals: (1) the desire to make the parent feel wanted while discussing them not being around; (2) the need to be gentle but still direct; (3) the practical necessity of designating one decision-maker without provoking family conflict; and (4) the desire to lessen the burden on the designated decision-maker by providing necessary information while still placing them in a decision-making role. Participants reported using several strategies to manage these complex dilemmas. These findings provide support for the utility of Goldsmith's normative theory of social support in the context of discussions about ACP. The results also provide a foundation for developing conversational guides to facilitate high-quality family conversations about ACP between adult children and their parents.